Institutions inDetail (PDF, 567K)

Institutions inDetail (DOCX, 190K)

This section of the Deinstitutionalization Toolkit includes the supportive detail on the subject of Institutions. The research and detailed information are intended to provide background for the Deinstitutionalization Toolkit:

Large State Institutions

Large Institutions: Trends and Populations

The peak of institutionalization for people with Intellectual disabilities and developmental disabilities (ID/DD) was in 1967, when 194,650 people with ID/DD nationally were housed in large designated state institutions. Figure 1 shows that by 2008, this number had been reduced to 32,909 (Lakin et al., 2010).

An additional 33,850 people with ID/DD were housed in state psychiatric facilities in 1967, but by 2009, this number had been reduced to 765. When addressing the institutionalization of people with ID/DD, it is therefore reasonable to focus our research on large state and nonstate facilities for people with ID/DD.

Figure 1: Average Daily Census of People with ID/DD in Large State ID/DD Facilities, 1950–2009

Source: Data from Lakin et al., 2010

Trends in the average daily census mask the dynamics of the movement to and from state institutions. New admissions have not stopped. Between 2008 and 2009, it is reported that 3,111 people were discharged and 870 had died. However, during the same period, reports indicate that 1,981 were admitted (Lakin et al., 2010). Thus, it is important to focus not only on moving people out of institutions but also on reducing new admissions.

Large Institutions: Population Characteristics

The population of people served in large (more than 16 residents) state institutions has changed since 1977, when the institutional population was more than four times what it is today. Table 1 shows the following information:

• The population has aged. The proportion of large state facility residents 21 years or younger declined dramatically between 1977 and 2008, from 36 percent to less than 5 percent. At the same time, the percentage of residents over 40 (ages 40 to 62 and 63 and older in table 1) increased dramatically, from 23 percent to 73 percent.
• The percentage of people with more significant levels of intellectual impairment has increased. Currently, 58 percent of institution residents have a profound intellectual impairment, compared with 46 percent in 1977.
• The type and level of assistance has changed. The percentage of residents with behavior disorders has increased substantially, and a higher percentage of residents need supervision with daily activities such as walking, eating, dressing, toileting, and communicating.

Table 1: Characteristics of Residents of Large State ID/DD Facilities, 1977 and 2008

(Data for 2009 are not available)

Source: Lakin et al., 2009

Comparison of the “Severity of Disability” of People in an Institution and in the Community

The residents of institutions in the United States vary in age, level of intellectual disability, number of coexisting conditions, and functional limitations. Typically, they include people who have significant and complex medical needs, behavioral issues, and psychiatric disabilities, as well as people who have grown old in the institution.

Research has revealed these two important facts about the population:

• More people with extensive support needs are served in the community than in institutions.
• A higher percentage of people in institutions have intensive support needs.

These facts about institutional populations present two important ideas about deinstitutionalization. The first indicates that people with extensive support needs can be served effectively in the community. The second affects the cost estimates for serving them. As discussed in the “Costs” topic area of the Deinstitutionalization Toolkit, costs are associated with a variety of factors, including level of need. For more information on this subject, see Section 6 of the Deinstitutionalization Toolkit.

Opponents of deinstitutionalization claim that people in institutions are “more disabled” than those in the community, and thus the track record of success of community living does not apply to those still in institutions. They claim that people remaining in institutions have such significant complicating conditions that either they cannot be supported in the community or the cost of supporting them in the community exceeds the institutional cost.

Table 2 shows that the data substantiate the claim at this point in California institutions, where a higher proportion of people who remain in institutions are older, have more profound intellectual disabilities, have more complicating conditions, and require more assistance than those living in the community. As the number of people living in institutions has been reduced in the past 40 years, those with functional skills and fewer complicating factors generally were discharged first. As a result, the 32,909 people living in state institutions are, on average, “more disabled” than the 436,000 who are receiving state support and living in the community. 

Table 2: State of California Department of Developmental Services Characteristics of Clients in Developmental Center Compared with Clients in the Community, December 2007

Source: State of California, Quarterly Client Characteristics Report, December 2007.http://www.dds.ca.gov/FactsStats/docs/Dec07_QRTTBLS.pdf

The proportions can distort an important reality. The California data indicate that vastly larger numbers of people with ID/DD and extensive needs for health or behavioral support are living in the community rather than in institutions. For example, although 59 percent of an institution’s residents have profound intellectual impairment compared with 5 percent of community residents, there are only 1,585 people with profound intellectual impairment in institutions compared to 9,256 in the community.

A Human Service Research Institute (HSRI) study confirms these findings. Utilizing the Support Needs Index (SNI), a well-established metric for needs assessment, researchers compared the 156 individuals living at the Southeastern Virginia Training Center (SEVTC) with a sample of people receiving services under the Home Community-Based Services (HCBS) Waiver program. They found that the people in SEVTC had a higher average score (111.96, compared with 101.74), but people in the community had a higher maximum level of support needs. In other words, many people in the community had needs equivalent to those at the SEVTC, and some had even more intensive needs (Fortune and Auerbach, 2009).

Table 3 compares the minimum, maximum, and average scores of the total SNI and of each of its component parts, and Figure 2 compares the distribution of SNI scores.

Table 3: Comparison of Support Needs of HCBS Waiver Clients and SEVTC Residents, 2009

Source: Fortune and Auerbach, 2009.

*The SNI is normed to represent support needs with average of 100 and a standard deviation of 15. For more information about the scale, see Fortune and Auerbach, 2009.

Figure 2: Comparison of the Distribution of Scores of the SNI between a Sample of Virginia’s HCBS Waiver Community and SEVTC Residents, 2009

Source: Fortune and Auerbach, 2009

The University of Minnesota Research and Training Center on Community Living further confirms this finding. Using data from the National Core Indicators in six states in 2006, Lakin et al. (2006) found that “HCBS Waiver finances services for people with a full range of disabilities and support needs, but ICF/DD beneficiaries on average on a number of measures exhibited substantially greater levels of impairment than HCBS recipients. Because of the greater total number of HCBS recipients on most of the same measures there were more HCBS than ICF/DD recipients with substantial impairments.” Table 4 shows the following examples:

• Fifteen percent of HCBS Waiver recipients were reported to have profound ID, compared with 39 percent of ICF/DD recipients, but of the combined HCBS and ICF/DD samples, 60 percent of the respondents with profound ID were HCBS Waiver recipients (Lakin et al., 2006).
• In addition, 11 percent of HCBS Waiver recipients were reported to be nonambulatory, compared with 20 percent of ICF/DD recipients, but of the combined HCBS and ICF/DD samples, 70 percent of those who were nonambulatory were HCBS Waiver recipients (Lakin et al., 2006).
• HCBS and ICF/DD recipients were not statistically different in the proportions with visual impairments, cerebral palsy, autism, monthly or more frequent seizures, or dual diagnoses of intellectual and psychiatric disabilities; or in the prescription of medication for mood, anxiety, or behavior disorders (Lakin et al., 2006).

Table 4: Selected Characteristics of Adults (18 and Older) with ID/DD Receiving Medicaid HCBS and ICF/DD Waiver Services in Six States

Table 4: Selected Characteristics of Adults (18 and Older) with ID/DD Receiving Medicaid HCBS and ICF/DD Waiver Services in Six States (continued)