Content uploaded by Florence D DiGennaro Reed
Author content
All content in this area was uploaded by Florence D DiGennaro Reed on May 22, 2015
Content may be subject to copyright.
A preview of the PDF is not available
Barriers to Independent Living for Individuals with Disabilities and Seniors
Abstract and Figures
Individuals with disabilities and seniors often lack the freedom to choose with whom they live and where they reside. Service options may involve moving consumers to large nursing facilities or other less-preferred settings rather than optimizing environmental supports in their own home or in less restrictive settings. Not only do adults usually enjoy greater choice when they live in their own homes relative to individuals living in congregate care or group home settings but independent and semi-independent settings are also associated with better outcomes and lower costs. Identifying variables that serve as barriers to independent living is especially important given estimates predicting that the numbers of seniors and individuals with disabilities will double in the next 20 years. This doubling will tax an already burdened and costly system of care. The present study queried consumers and other key stakeholders about potential barriers to independent living and their importance. Findings not only revealed a high degree of overlap between identified barriers and their importance ratings within groups but also showed clear differences in potential barriers across the groups assessed (individuals with disabilities and senior citizens).
Figures - uploaded by Florence D DiGennaro Reed
Author content
All figure content in this area was uploaded by Florence D DiGennaro Reed
Content may be subject to copyright.
... As intellectual disability always being associated with social functioning where it could affect the person itself, as well as the family and society as a group (Shree & Shukla, 2016), it is hard for people to define and adapt the concept of independent living into the lives of a person with an intellectual disability. Although there are many studies, focus on the concept of independent living among person with disabilities in general (Baart & Taaka, 2017;Barrera et al., 2009;Brisenden, 1986;DiGennaro Reed et al., 2014;Morris, 2004) but there were still limited scholars discussing on independent living among person with intellectual disability. Lack of studies discussing the concept and meaning of independent living among persons with intellectual disability may cause the lack of literature review to help the reader understand the concept of independent living. ...
Independent living is one movement that enables people with disabilities to exercise choice and control over their lives and make all decisions regarding their own lives. Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) clearly stated that any person with disabilities deserves the same opportunity to make choices and control their life. Persons with disabilities may choose where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement. Even though many studies discuss the concept of independent living among persons with disabilities in general, the research focusing on intellectual disability is still limited. Thus, this research aims to define the meaning of independent living among persons with intellectual disabilities. This systematic literature review adapts the publication standard of ROSES. It analysed 30 relevant articles from Scopus and Web of Science databases. The study identified three themes regarding the meaning of independent living among persons with intellectual disability, namely (a)responsibility, (b)decision making, and (c)new skills. Therefore, this paper discusses how the three themes emerged and the three central meanings of independent living for intellectual disabilities.
... We found high levels of independence in activities of daily living, and almost all patients could live at home independently, which is consistent with an earlier study on functional outcomes after moderate to severe TBI 10 . Living at home independently is often associated with patient empowerment and lower societal cost 40 , and could therefore be considered a favorable outcome. However, independent living of people with disabilities leads to increased hours of care for the informal caregiver, which is related to a higher caregiver burden 41 . ...
Traumatic brain injury (TBI) is associated with a high social and financial burden due to persisting (severe) disabilities. The consequences of TBI after Intensive Care Unit (ICU) admission are generally measured with global disability screeners such as the Glasgow Outcome Scale-Extended, which may lack precision. In order to improve outcome measurement after brain injury, a comprehensive clinical outcome assessment tool called the Minimal Dataset for Acquired Brain Injury (MDS-ABI) was recently developed. The MDS-ABI covers twelve life domains (demographics, injury characteristics, comorbidity, cognitive functioning, emotional functioning, energy, mobility, self-care, communication, participation, social support, and quality of life), as well as informal caregiver capacity and strain. In this cross-sectional study, we used the MDS-ABI among formerly ICU admitted TBI patients to explore the relationship between dichotomized severity of TBI and long-term outcome. Our objectives were to 1) summarize demographics, clinical characteristics, and long-term outcomes of patients and their informal caregivers and 2) compare differences between long-term outcomes patients with mild-moderate TBI and severe TBI based on Glasgow Coma Scale (GCS) scores at admission. Participants were former patients of a Dutch university hospital (total N=52; mild-moderate TBI N=23; severe TBI n=29) and their informal caregivers (n=45). Hospital records were evaluated, and the MDS-ABI was administered during a home visit. On average 3.2 years after their TBI, 62% of the patients were cognitively impaired, 62% reported elevated fatigue, and 69% experienced restrictions in ≥2 participation domains (most frequently work or education and going out). Informal caregivers generally felt competent to provide necessary care (81%), but 31% experienced a disproportionate caregiver burden. All but four patients lived at home independently, often together with their informal caregiver (81%). Although the mild-moderate TBI group and the severe TBI group had significantly different clinical trajectories, there were no persisting differences between the groups for patient or caregiver outcomes at follow-up. As a large proportion of the patients experienced long-lasting consequences beyond global disability or independent living, clinicians should implement a multi-domain outcome set such as the MDS-AB to follow up on their patients.
... Independence and dependence areas generally coexist in individuals, and dependence is often a necessary factor in achieving independence (Vorhaus 2007). Therefore, the concept of 'independence' should not be considered as 'complete autonomy' because the promotion of the 'independent living' requires the awareness of the barriers and the possibility of persons with disability to receive the appropriate support to live in the way they want (Trent et al. 2002;DiGennaro Reed et al. 2014). ...
Background:
The United Nations has declared that people with disabilities should be enabled to live as independently as possible, since independence is correlated with a better quality of life. Consequently, services need to have common and validated measurement tools for the evaluation of the different levels of personal support needs in order to promote independent living skills. We aimed to create and validate the Adult Independence Living Measurement Scale (AILMS) to estimate personal skills considered tantamount for independent living in adult persons with intellectual and developmental disabilities.
Methods:
AILMS is a short informant-rated assessment tool consisting of 19 items (goals) regarding the most important skills related to independent living. AILMS total score is directly proportional to the degree of independence, with scores ranging from 19 to 76. Our validation is a multicentre study attended by 243 subjects, 110 female and 123 males, with a median age of 37 years and with an interquartile range (IQR) of 18 (25th percentile [Q1] 29 years to 75th percentile [Q3] 47 years). All subjects had a diagnosis of intellectual disability associated with various neurodevelopmental disorders or syndromic conditions.
Results:
The AILMS shows a wide range of scores with a minimum score of 21 and a maximum of 72. We found no floor or ceiling effects for the total score on the AILMS. Cronbach's α coefficient (= 0.95), based on the 19 AILMS items, indicated high internal consistency. The tool demonstrates a very good agreement even when comparing the results submitted by two different interviewers. It also shows an excellent temporal stability of 1 week, with intraclass correlation coefficients both of 0.97. AILMS total scores do not differ by sex or age, while statistically significant differences are observed between people with different levels of severity of ID. Convergent validity of AILMS was analysed by correlating its total scores with the Italian validated versions of the Support Intensity Scale (SIS-I) and the Alzheimer's Functional Assessment Tool (AFAST-I) scores. Strong inverse Spearman correlations coefficients (rs ) were found both for the Support Need Index of the SIS-I (rs = -0.66; P < 0.001) and AFAST-I (rs = -0.73; P < 0.001). Scores of support needs in exceptional health disorders of the SIS-I appear unrelated to AILMS total scores (rs = -0.01; P = 0.05), confirming the divergent validity of the new scale. Exploratory factor analysis reveals three underlying factors within the AILMS, with factor 1 explaining 51.2% of the total variance (Cronbach's α = 0.92) composed of predominantly nine advanced daily activities.
Conclusions:
The AILMS has good psychometric properties and user friendliness and may therefore be a valuable addition to the current informant-rated tools for screening and assessment of independent living skills of individuals with intellectual and developmental disabilities.
... We posit that the unintended result of the vaccine incentive programs is a storage of available and willing LVNs to work with vulnerable populations. Previous research has shown that people with disabilities have better outcomes with in-home care, as opposed to placement in facilities (DiGennaro et al, 2014). Research on in-home care has shown that patients have an overall better quality of life with fewer hospitalizations, less rapid deterioration in physical and psychosocial health statuses, and greater patient satisfaction (Zimmer et al, 2011). ...
Covid19 has created a care economy collapse. As a result of the pandemic, salary incentive programs have been created to encourage Licensed Vocational Nurses (LVNs) to participate in Covid related programs. Many of these programs pay significantly more than the typical salary for LVNs working in home care. As a result, there has become a storage of available LVNs to work with vulnerable populations that need in-home care. Diving into the reasons for the shortage, this study also points to a secondary cause in a salary analysis within Los Angeles County. Results indicate that the average salary LVN salary in LA County is unsustainable for a single parent home. Research has previously shown that keeping people with disabilities in the home results in better outcomes than institutional placement. We will examine what can be done to address the shortage of at home LVN support before there is forced institutionalization.
Demographic data projections for the United States indicate a significant increase in the population of older persons with disabilities. The Americans with Disabilities Act (ADA) mandates community access for individuals with disabilities, including older individuals who are aging with or aging into disabilities. However, there is limited research regarding the knowledge and the use of the ADA among this population specific to their perceptions and experiences regarding barriers and facilitators to community access and participation as mandated under the Act. The purpose of this qualitative focus group study was to explore the perceptions and experiences of a sample of older adults with disabilities regarding their community access, and their knowledge and utilization of the provisions of the ADA to facilitate community participation. Analysis of results identified three predominant themes within this sample of older adults: experiences with structural and attitudinal barriers to community access leading; fear of loss of autonomy and independence in the community, and how they deploy; coping and advocacy strategies to address barriers. Recommendations for improving ADA knowledge, access, and utilization among the population, as well as senior service providers, are also addressed.
Behavior analysis has long been used to improve the quality of life of people with intellectual disabilities (IDD); some of the first examples of applied behavior analysis were conducted with people with IDD. As there has been a shift from custodial care to meaningful quality of life and from institutionalization to community integration, the goals of behavior change programs and the methods used have been adapted to be kinder and more focused on well-being. We discuss how the current behavioral literature allows clinicians and researchers to conduct work that aligns with the 2006 UN Convention on the Rights of Persons with Disabilities. Despite significant improvements in behavior-analytic programs for people with IDD, there remains room for improvement with regard to ensuring people with IDD have access to the full range of life experiences.KeywordsIntellectual disabilityDevelopmental disabilityRightsQuality of lifeAdults
p>Despite the Government of Kenya’s commitment to provide education for all its citizens including those with disability, those with mild and moderate ID seem not to proceed for further education, training, employment and settling in their community after special or primary school. The main goal of the study was to examine the school and community preparedness for transition of young adults with mild and moderate intellectual disability for independent living in Kiambu and Murang´a counties, Kenya. The specific objectives of the study were investigated barriers to successful transition of young adults with intellectual disability for independent living and to establish the levels of independent living among young adult graduates with intellectual disability within the last five years in Kiambu and Murang’a counties. The study adopted descriptive research design which utilized both quantitative and qualitative research approaches. Target population was 239 headteachers, 405 SNE teachers, 1,200 young adults in school, 600 young adult graduates and 199 opinion leaders in 9 special schools and 230 special units. Purposive sampling method was used to select 120 young adult learners, 60 graduate, 30 headteachers and 20 opinion leaders while simple random sampling method was used to select 48 SNE teachers to participate in the study. This gave a total of 278 study respondents. Questionnaires and interview guides were used to collect data. The study established that dual diagnosis, assistance of taking medication independently, medical condition, running or wandering from home and loneliness were the main barriers to independent living for adult learners with ID. The study found out that the level of independent living was low among individuals with intellectual disabilities in the schools and units of study. After graduating from special schools and units, majority of learners with ID went back home and they were not engaging in any activity after school. Among the few who were engaging in activities after school, most of them were doing beadwork and weaving, hairdressing, farming, carpentry and dressmaking. Others were employed in their former schools/units as security guards. Graduation of the learners with intellectual disability was not considered as a very relevant process and hence most schools were not given any certification to learners with ID. This is despite most of the teachers and headteachers reporting that learners with ID graduated after learning the required skills. The study recommends that; the government through the Ministry of Education should create a special class in secondary schools for those in the borderline; provide policy that Ministries, NGOs, private sectors among others should employ young adults with ID to promote independent living.
Article visualizations:
</p
The book chapter purports to provide insights, research gaps, and lessons using a narrative literature review approach. The discussion was centered on unveiling aging (aging with disability and disability with aging included) advocacy and activism for living arrangement-instutionalized, while taking inspiration from disability movement that is led by disabled people that adopted independent living as an example of community living. The discourse discovered that advocacy on aging began in the 1970s, while oriented toward feminism; however, the twenty-first century fosters social innovation as well as learning from independent living, thereby making the chapter to foster the idea of giving options for the aging population to choose preference on living arrangements that enhance freedom and dignity as essential human rights.
Background
Persons with intellectual/developmental disabilities (IDD) may struggle to achieve and manage independent living and may often require assistance from caregivers. Teaching adults with IDD to perform activities to promote independence, with the least amount of assistance, may improve their self-determination and independence.
Objective
The Ram Chefs program is a virtual culinary program designed to teach basic cooking skills to adults with IDD. The first purpose of this qualitative study was to explore differences in perception of cooking independence between young adults with IDD (N = 8) and parents/caregivers (N = 9). The second purpose was to evaluate the satisfaction and continue growth of the Ram Chefs program.
Methods
The Active Engagement Model provided the conceptual framework for this qualitative phenomenological study. To explore the shared experiences of the adults with IDD versus their parents/caregivers’ perception of meal choice and independence in preparation, one-on-one interviews were conducted. Focus groups were conducted to evaluate the satisfaction of the Ram Chefs program. Data were analyzed using focused coding, significant statement formulation, and development of structural descriptions.
Results
Three themes emerged: adults with IDD can cook easy-to-prepare meals independently, adults with IDD want total meal preparation independence, and parents/caregivers thought total meal preparation independence was achievable with assistance. There were no stated discrepancies between the adults with IDD and the parents/caregivers regarding their meal choice/preparation. Results indicated the young adults with IDD benefitted from the virtual culinary program and wanted to continue improving culinary skills, offering them more cooking independence and their parents/caregivers believe that this is possible.
Conclusion
Increasing cooking independence for young adults with IDD may offer benefits including increased self-efficacy and self-determination, may improve nutrition education to support healthier eating, and increase employability in the food service arena.
What if your existing home could be made smarter and detect when you need support? What if there was a new way to deliver care to you right when you needed and only for as long as necessary? These questions, and others like them, have guided Community Living Opportunities, Inc. (CLO) in the innovation of service delivery methods. In concert with HomeLink Support Technologies, CLO has pioneered technology that revolutionizes the manner with which services are delivered to adults with disabilities.
This study examined the met and unmet need for Medicaid personal care services (PCS) and home- and community-based service (HCBS) waivers across the states. Medicaid directors and state officials working with PCS and HCBS were interviewed by telephone in l998-1999 to collect descriptive and statistical data. A total of 26 states offered PCS to 467,487 participants in l998-1999, and 49 states offered waiver services to 561,510 participants in l997. In spite of wide variations in total HCBS participants per capita, 42 states reported inadequate waiver slots and waiting lists. Even in states with the highest participant rate per capita, state officials reported waiting lists for theHCBSwaiver programand many target groups that were not adequately covered by the current HCBS waivers. A number of barriers existed to expanding HCBS services, including an inadequate supply of home- and community-based providers, limited state legislative support for the programs, and federal regulatory barriers such as restrictions on need criteria.
Consumer outcomes and recurrent (non-capital) service costs were compared for matched groups of Australian adults with intellectual disability living in group homes or semi-independently. Outcomes examined included quality of life, safety, aloneness, social dissatisfaction, personal care, domestic management, health care, money management, social network, use of mainstream community services, community participation, domestic participation, stability of place of residence, living companion turnover, and natural support. Most outcomes did not differ significantly by group. Where significant differences were evident, participants living semi-independently experienced better outcomes: significantly less social dissatisfaction, more frequent and independent use of community facilities, more participation in domestic tasks, and greater empowerment. There were no outcomes with significantly better results for group home participants. The lower level of staffing provided to semi-independent participants was not associated with poorer outcomes. Per-person expenditure was substantially higher for group home participants.
This article describes older adults' experiences of a late‐life residential relocation from a home to a long‐term health care setting. Findings from 14 participants who engaged in a focus group and/or an individual interview supported 8 major themes. Thematic experiences were related to precipitating factors prior to the move, risks and protective factors in relocation, and aspects of positive aging. Implications for clinical practice with older adults who undergo late‐life transitions are described.
Consumer outcomes and recurrent (non-capital) service costs were compared for matched groups of Australian adults with intellectual disability living in group homes or semi-independently. Outcomes examined included quality of life, safety, aloneness, social dissatisfaction, personal care, domestic management, health care, money management, social network, use of mainstream community services, community participation, domestic participation, stability of place of residence, living companion turnover, and natural support. Most outcomes did not differ significantly by group. Where significant differences were evident, participants living semi-inde pendently experienced better outcomes: significantly less social dissatisfaction, more frequent and independent use of community facilities, more participation in domestic tasks, and greater empowerment. There were no outcomes with significantly better results for group home participants. The lower level of staffing provided to semi-independent participants w as not associated with poorer outcomes. Per-person expenditure was substantially higher for group home participants.
With aging, people experience decrements in the areas of sensory, neuromuscular, cognitive, and psychosocial function. In thispa-per, anoccupational therapistexplainsage-related decrementsin termsof their effect on wellness or function. Then, function is matched with suggestionsforenvironmentalmodificationsandaccommodationsthatfa-cilitate the occupational therapy objectives of safety and activity. The overall goal is to enable a senior's independent function with the help of hishome.
The independent living (IL) paradigm proposes that the presence of environmental barriers affects critically the level of independence of people with disabilities. This study refines the IL paradigm and evaluates empirically the role that the environment plays in independent living, especially the influence of home adaptations and other housing variables on disabled people and their families. The results of this research indicate that housing adaptations have a variety of impacts upon the productivity of disabled people. Other housing issues are very important to individuals with disabilities, particularly tenants. This paper concludes by presenting implications for theoretical development and recommendations for housing policies which are responsive to the needs of disabled people.
This chapter argues that the understanding of the health, well‐being, and life experiences of people with intellectual disabilities would be enhanced significantly if more serious attention is paid to issues relating to their socioeconomic position (SEP), including their exposure to poverty. The chapter discusses ways in which the measurement of SEP/poverty can be incorporated in research undertaken with people with intellectual disabilities. The chapter briefly reviews present knowledge about the association between SEP and health, well‐being, and life experiences among the general population. The chapter demonstrates the relevance of poverty and SEP for research involving people with intellectual disabilities and provides some information on measures of poverty /SEP that investigators can apply to their own work. Despite the obvious health inequalities and early mortality experienced by people with intellectual disabilities, research examining these constructs has, for too long, neglected the central importance of poverty and inequalities in SEP experienced by many people with intellectual disabilities across the lifespan.