Community living is a major focus of national policy and related litigation (e.g. the Americans with Disabilities Act in 1990, the Supreme Court Olmstead v. L.C. decision in 1999, Workforce Innovation and Opportunity Act in 2014 and the Home and Community Based Services Final Rule in 2014). Increasingly public policy is promoting and requiring that federal funding be used to support people to live, work, and participate fully in their communities.
Community living and participation means being able to live where and with whom you choose; work and earn a living wage; participate in meaningful community activities based on personal interests; have relationships with friends, family and significant others; be physically and emotionally healthy; be able to worship where and with whom you choose (if desired); have opportunities to learn, grow and make informed choices; and carry out responsibilities of citizenship such as paying taxes and voting.
Of the estimated 6.2 million people in the United States with intellectual or developmental disabilities (IDD), most live with their families and many need and receive long term services and supports. When people live outside of their family home they have several options for community living including opportunities to live in apartments with individualized support, with one or two other people with support, with host families, and in small group homes with other people with disabilities and 24-hour support. Unfortunately, many people with IDD also may still live in large, segregated congregate places including large group homes (with 7 or more people living there), residential programs located on campuses, and state and private institutions, which could limit community inclusion.
The benefits of living in smaller community settings are well-documented. People who live in these environments have more choices and control over their lives, have more friendships, are engaged in their communities, are safer, and experience greater life satisfaction. The ability to live and thrive in individualized living situations and be in charge of their own home (e.g., staff schedule, what/when they eat, who visits and when) is possible for all persons regardless of need when the funding and supports are made available to them. That is, all people, regardless of the significance of their disability, can lead lives they control by being supported to experience the opportunities that community life offers and to choose how they will participate in their communities. All too often, many individuals with IDD are never afforded these opportunities and in many instances, there is systemic denial of choices due to constraints of service delivery systems to provide such opportunities. Instead, low expectations sometimes held by professionals, families, community members, and others who touch the lives of people with IDD, result in perpetuated assumptions that people with IDD need and require 24-hour support, group employment, and group living. Approaches such as Community First and Employment First statewide initiatives emphasize an alignment of policies, funding, and practices to promote people with disabilities living, working, and contributing in their communities as the first option in the provision of services and supports.
Despite the evidence, there is a growing interest in many states by some advocates to move away from community living in favor of building new congregate programs that segregate people with IDD from their communities (e.g. working farms, campus models and gated neighborhoods). Often the interest and desire to create new congregate settings is in response to advocates’ frustrations with: a) long waiting lists for community living, b) issues related to quality of community services, c) lack of options that are person-centered and able to meet the specific needs of each individual person, and d) staff who are not adequately prepared and not specifically trained to support people with certain types of significant needs. These concerns about community living are both real and significant, but the solution to return to building large, segregated, isolated living programs is not the answer to improving quality of life for people with IDD and could result in less positive outcomes. It is tempting to revert to institutional-type congregate settings when the resources or capacity to improve community living options are lacking. The alternative is to create and advocate for high quality community living options that are supported by federal and state governments. It is also important to make people aware of what is possible and what practices exist that result in quality community living. People with significant disabilities do, can, and should live in the community with the support they need and deserve. They have a fundamental right to do so.
Access to community services. Many people with disabilities experience access challenges to individualized community supports. There are many issues that create barriers for people with significant disabilities to live and work in the community. Some of these are:
Quality in community services. There is wide variability of quality within community residential, employment and other support models across the US.
Funding for community services. The various funding mechanisms used to support community living and employment are using antiquated models; the funding policies are not flexible, do not meet the needs of individuals, and over-rely on 24-hour staffing models.
Workforce challenges. The ability to meet the needs of people with IDD in the community, ensure quality of community services, and offer more flexible and individualized options requires a better compensated, stable, highly ethical and competent workforce.
Everyone with an intellectual or developmental disability deserves to live in the community where they have the opportunity to experience vibrant lives that include work, friends, family, and high expectations for community contributions. Our systems to support people with IDD should promote individual growth and development through the provision of best practices in fully integrated community settings. It is essential to close institutions and at the same time create and support our existing communities to develop the capacity to support all people with IDD in their communities through individualized supports that:
American Association on Intellectual and Developmental Disabilities
Board of Directors
June 5, 2016
Association of University Centers on Disabilities Board of Directors June 23, 2016
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