Figure 3. Proportion of People Who Like Their Home or Where They Live

Figure 4. Proportion of People Who Would Like to Live Somewhere Else

Figure 5. Proportion of People Who Report That They Never Feel Scared in Their Home

Figure 6. The Proportion of People Who Have a Job in the Community by Each Type of Community Employment*

*too few cases to report outcomes by people living in institutional settings

At least four well-regarded meta-analyses of institutional versus community care have been published since 2005. Together, the analyses review more than 150 articles that meet accepted criteria for quality research.

• Lakin et al. (2011) reviewed 38 studies related to changes in adaptive and challenging behavior associated with movement from institutional to community residences. They found that more than two-thirds of the studies showed improvements in adaptive behaviors of individuals in the community.
• Kozma et al. (2009) reviewed 68 studies published in English from different countries since 1997. The work focused on the following categories: (a) community presence and participation, (b) social networks and friendships, (c) family contact, (d) self-determination and choice, (e) quality of life, (f) adaptive behavior, and (g) user and family views and satisfaction. They found that small-scale arrangements are superior to large, congregate options in most domains. Regarding quality of life, they reported that studies showed people in small-scale community-based residences or in semi-independent or supported living arrangements have a better objective quality of life than do people in large, congregate settings. Particularly, people in the small community settings have more choice-making opportunities, have larger social networks and more friends, access more mainstream facilities, participate more in community life, have more chances to acquire new skills and develop or maintain existing skills, and are more satisfied with their living arrangements.
• Walsh et al. (2010), in a meta-analysis of literature published between 1995 and 2005, found that the research showed consistent evidence that smaller settings provided for greater choice, self-determination, and participation in community-based activities. However, they found no evidence for better physical health or material well-being, and little evidence for a relationship between type of setting and employment.
• Stancliffe et al. (2009) used data from the NCI in six states to assess self-reported satisfaction and sense of well-being in a sample of 1,885 adults with ID/DD receiving Medicaid HCBS Waiver services and ICF/DD services. Questions dealt with such topics as loneliness, feeling afraid at home and in one’s neighborhood, feeling happy, feeling staff are nice and polite, and liking one’s home and work/day program. Loneliness was the most widespread problem, and small percentages of people also reported negative views in other areas. The research revealed consistent benefits of residential support provided in very small settings—with choices of where and with whom to live—and to individuals living with family.

The literature reviews indicate that community-based settings, services, and supports are superior to institutional settings in many areas, but certain key elements must be in place in order for the community living experiences to be optimum.

Community Based-Services—Quality ‘Matters’

Community Integration and Participation Matters

Table 3 displays information from the NCI 2009–2010 survey. The chart depicts the number of times a person participated in an activity at a regular interval. The scores reveal that the consumers surveyed had a high level of participation in daily life activities reflecting community integration.

Table 3. Activity of People within a Time Period

A         Number of times people went shopping in past month

B         Number of times people went out on errands in past month

C         Number of times people went out for entertainment in past month

D         Number of times people went to exercise or play integrated sports in past month

E         Number of times people went out to religious services in past month

F          Number of times people went on vacation in past year

* average of averages

N=Number of Individuals

Source: Compiled from tables 1–7 of the NCI 2009–2010 survey.

Additional Consumer Survey scores may be found at:

The Quality of the Community Care Matters

Physical presence in the community is not the same as integration and inclusion. Moving people from an institution to the community does not automatically result in positive impacts. For example, Kozma et al. (2009) note that results vary even within service models of the same type, depending on service characteristics. This implies that the shift from institutional care to community living does not guarantee a better outcome for all residents. In addition to changing where people live, it is critical to have the skilled staff necessary to support individual service requirements and goals.

Individual and Personalized Supports Matter

Kozma et al. (2009) found that people with higher support needs—whether because of the nature of their intellectual and physical disabilities or their challenging behavior or social impairment—often experience outcomes that are not as good as people who are more independent and have less complex medical or behavioral needs. However, demonstration projects have shown that it is possible to greatly increase the level of outcomes for people with the most severe disabilities to a level higher than achieved in any institutional setting. Three factors are necessary to create real opportunities for people with more severe disabilities in community settings: available activity, available personal support, and effective assistance (Mansell, 2006).

Table 4. The Proportion of People Who Report Going to a Day Program or Some Other Daily Activity

Source: Consumer Outcomes – Phase XII Final Report 2009-2010 Data.

Community-Based Consumer Choice Matters

One of the most important indicators of a quality life in the community is the extent to which the person with ID/DD is empowered to make decisions on the issues that his or her life.

Again, we look to the NCI 2009–2010 survey for the key indicators reflecting the extent to which community residents participate in decision-making activities, have a voice in their daily schedule, and are able to choose who will provide professional support and services.