Barriers to Independent Living for Individuals with Disabilities and Seniors

Abstract

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 asso-ciated with better outcomes and lower costs. Identifying var-iables 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). The numbers of seniors and individuals with disabilities are expected to double in the next 20 years (Harrington et al. 2002) with estimates predicting that 20 % of the US popula-tion will be 65 years or older by 2030 (Jungers 2010; LeBlanc et al. 2012). As the baby boomer generation ages, barriers to an already taxed system will emerge and prevent individuals from accessing needed support. Unfortunately, barriers to service provision presently exist and result in service delays for those most in need of care. Long wait lists, a lack of legislative support, and a limited number of skilled providers prevent consumers from receiving the care and support they need (Harrington et al. 2002; LeBlanc et al. 2012). Moreover, the costs are staggering; both in-home and out-of-home ser-vices are associated with high societal and individual financial costs (Centers for Medicare and Medicaid Services [CMS], 2010). For example, individuals living in nursing home facil-ities pay, on average, $50,000 annually. Estimates indicate that state insurance programs, such as Medicare and Medicaid, spent $143.1 billion for nursing care facilities in 2010 and $128.5 billion for residential and other health-related expenses (CMS, 2010). Many individuals and insurance companies simply cannot afford the services that are needed and/or desired. Despite federal legislation (e.g., Developmental Disabil-ities Assistance and Bill of Rights Act of 2000, P.L. 106– 402) and other important advances of the independent living movement—which emphasize empowerment of consumers in their own life decisions (Frieden 1980)—individuals with disabilities and seniors often lack the freedom to choose with whom they live and where they reside (Stancliffe et al. 2011). Service options may include moving consumers against their desire to large nursing facilities or other less-preferred settings rather than optimizing environmental supports in their own