Starting to Live a Life - Moving from Institutions to Community Living Can Be Both Challenging and Rewarding

A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).

Until a few decades ago, many adults with disabilities lived in institutions, such as nursing homes or large group homes, instead of living in their communities. Recently, a growing number of adults with disabilities have been able to transition from institutions to private or shared homes in the community, due to legal decisions and the development of home and community-based services programs. Adults with disabilities have many more freedoms and opportunities in the community than in institutions, but the transition process can be challenging. In a recent NIDILRR-funded study, researchers asked people who had recently transitioned from institutional to community living about their experiences with the transition, including the factors that helped or hindered their transition process.

Researchers at the Americans with Disabilities Act Participation Action Research Consortium interviewed 153 adults with disabilities throughout the United States who had moved from an institution to a community living environment within the past 5 years. The participants were between the ages of 18 and 65 when they transitioned out of institutions and had a variety of disabilities, including mobility, psychiatric, and cognitive disabilities. The researchers asked the participants about their transition to community living including what community participation meant to them; the types of activities in which they wished to participate; and factors that helped or hindered their participation.

The researchers found that the participants’ responses fell into four major themes:

  1. Transition is both a moment in time and an ongoing process: The participants described their move from institutional to community living as both single event – the day they moved out of the institution – and an ongoing process as they adjusted or readjusted to life in the community. They reported that it took time to “get back into the swing of things” and to adjust to community life after institutionalization. In particular, the participants faced the challenge of building roots in a new community. Some of the participants also described the challenge of adjusting to new freedoms and a loss of structure after leaving an institution, where their daily schedules and choices were often strictly controlled.
  2. Being free to engage in everyday occupations is fundamental to improving quality of life: The participants described finding everyday activities to be meaningful, particularly those activities that are often taken for granted by those who have not experienced institutionalization. The participants enjoyed activities such as shopping, cooking, dining out, or taking their dog on a walk, for example. Engaging in these everyday activities was critical for them to feel like they were “living a life” in the community. The participants also sought to engage in productive activities, like employment or education, and to build friendships and romantic relationships.
  3. Community barriers make it difficult to participate fully: Many of the participants described one or more factors that prevented them from fully participating in desired community activities. The most commonly cited barriers were limited finances; a lack of accessible transportation; a lack of needed supports, such as reliable personal care attendant services; lack of physical access to community amenities; and negative social attitudes toward people with disabilities. The participants described how these barriers interacted to limit their participation in desired activities. For example, some of the participants stated that they wanted to work to earn more spending money, but they did not have a way to get to and from work, or that they wanted to attend church but could not because they could not secure reliable personal care services to help them get ready on-time.
  4. Participating in the community leads to building or rebuilding one's social identity: Participants described loss of autonomy when living in institutional settings, which led some to grapple with their sense of self and their identity as members of a community. Some of the participants described a positive change in their sense of self as they transitioned to becoming fully participating members of their communities. These participants derived positive identities from giving back and becoming involved with disability advocacy organizations, such as local centers for independent living. There were differences in the participants’ beliefs about their ability to participate in the community, with some of the participants striving to overcome environmental barriers so that they could participate, while others believed that their disabilities precluded them from engaging in desired activities.

The authors noted that while individuals benefit greatly from transition into their communities, they may also need specialized supports in order to help them achieve their community participation goals. Some of the supports emphasized in this study included job-seeking assistance, transportation support, access to reliable personal care attendant services, and connections with peers with disabilities. Disability service providers may wish to partner with local disability advocacy organizations, such as centers for independent living, to foster collaboration with consumers and improve public attitudes toward including people with disabilities in community life.

To Learn More

The Americans with Disabilities Act Participation Action Research Consortium (ADA PARC) is a NIDILRR-funded center that conducts research on participation disparities people with disabilities experience at national, state, and local levels.  Learn more about this participatory action research. ADA PARC has also published a new webpage highlighting the stories of people who have attempted to transition out of nursing homes and institutions to the community, and a video documentary produced by them.

The Research and Training Center on Community Living conducted several research interventions to promote community living including developing a health promotion assistance tool, developing informal personal attendant training programs, and building capacity for full community participation. Learn more about these studies and download Your Action Planning Guide for Promoting Full Community Participation Among People with Disabilities.

The Rehabilitation Research and Training Center on Community Living and Participation of Individuals with Psychiatric Disabilities offers a wealth of resources on community participation, employment and education, citizenship, relationships, and much more. They also offer guides for employers, community providers, and faith groups to help create welcoming communities.

Cognitopia has a suite of web-based tools to help people with cognitive disabilities set goals, develop routines, and manage their individual employment or education plans. These tools were developed under several NIDILRR-funded grants and are offered under a subscription model.

To Learn More About this Study

Angell, A. M., et al (2020). “Starting to live a life”: Understanding full participation for people with disabilities after institutionalization. American Journal of Occupational Therapy, 74. This article is available from the NARIC Collection under Accession Number J84027.

English
Date published: 
2020-12-16