The simplest alternative procedure for using the Institutional Population Component statistics to obtain more realistic estimates of the populations of residential facilities for people with mental retardation, particularly the smaller ones, is to in effect reweight its sample to reflect known populations of different types of facilities. This can be done by using the proportional estimates from the 1987 NMES sample, those reported in Part 2 and applying them to more accurate total population statistics on people in mental retardation facilities by size and type as are known and reported by the individual states. Such statistics, based on June 30, 1987 reports of all state mental retardation/developmental disabilities agencies, are available (Lakin et al., 1989). These statistics generally coincide with the dates of the NMES interviews. These statistics indicate that small (15 or fewer resident) mental retardation facilities did not house 65,000 people in 1987, they housed on the order of 118,500 people. Use of the data obtained in NMES to respond to the practical questions asked about mental retardation facilities and their residents in most instances need to reflect that reality.
Table 37 presents selected characteristics of the NMES sample which have been adjusted to the nationally aggregated reports of individual states regarding the populations of people with mental retardation and related conditions in mental retardation facilities in June 30, 1987. In Table 37, the statistics presented outside of parentheses are the proportions of all residents within facility categories reported to exhibit the selected behaviors/conditions as obtained from the analyses reported in Part 2. In parentheses are population estimates obtained when these proportions were applied to national population statistics reported by the states.
These alternative population estimates are briefly discussed in the following pages. These comments focus primarily on the differences of significance between the estimated populations of small mental retardation facilities, which the Institutional Population Component estimated to be 64,936 people with mental retardation and related conditions in 1987, but which states reported to be 118,570 people on June 30 of that same year. Following this presentation is a discussion of the extent to which evidence exists to support such alternative estimates.
Level of Mental Retardation
According to the NMES population estimates, in 1987 there were an estimated 8,834 people with profound mental retardation in small mental retardation facilities. This represented 13.6% of the population estimated to be in small facilities (64,939). If the 13.6% of all residents were applied to the state reported population of facilities with 15 or fewer residents, an estimated small facility population of 16,126 persons with profound mental retardation would be obtained. Similarly, the NMES estimated 15,258 persons with severe mental retardation in the smaller community based facilities. Application of NMES proportional estimates to the known population of the smaller facilities would yield an estimate of 27,864 people with severe mental retardation in community facilities.
Adjusting the NMES statistics may have importance beyond that of improved accuracy of estimate. Considerable debate continues at the federal and state levels with respect to the continuing need for institutional care. Many questions raised in this debate revolve around whether appropriate services can be provided for people with the most severe handicaps with small community settings. Clearly the extent to which community-based living is already being provided to persons with severe impairments is important evidence of the viability of community living settings for all, or virtually all, persons with mental retardation and related conditions. Regarding this issue an estimate that 16,126 persons with profound mental retardation (or 20% of persons with profound mental retardation in mental retardation facilities) are currently living in community facilities suggests significantly different placement practices and community residential services viability than an estimate of 8,834 (or 12% of persons with profound mental retardation in mental retardation facilities).
Estimated proportions of residents with mental retardation and related conditions exhibiting on occasion various types of disturbing behavior indicates the general prevalence of such behavior to be relatively similar in large and small facilities (again, with the important caveat that the Institutional Population Component did not include data on frequency, duration or intensity of these types of behavior). Simple reweighting of the NMES proportions to the known populations of small and large facilities increases population estimates of persons with behavior problems in small facilities by 82.6%. Again, the adjustments have the effect of suggesting that community-based settings are currently providing residential services to many more thousands of people with problem behavior than would be suggested by the original NMES estimates.
Proportions of persons with mental retardation and related conditions in small and large mental retardation facilities show small facility residents to much more often relatively independent in functioning. However, if proportional statistics are adjusted to known populations, it is notable that there are as many people estimated to be able to dress without assistance in large facilities as in the smaller community-based facilities. There are nearly as many people able to use the toilet independently in large facilities as in smaller community-based facilities (81% of the small facility estimate) and there are nearly as marry people able to walk across the room independently in the large facilities as in the small facilities (91% of the small facility estimate). Without adjustments to known populations, estimates from NMES would suggest a much greater proportion of people with significant functional limitations living in large facilities than is actually the case. For example with respect to independent toilet use, NMES population estimates indicate that 86.9% of all residents of mental retardation facilities cannot independently use the toilet live in large facilities. Use of alternative population statistics produces an estimate of 76.4% of all residents not independent in toilet use are living in large facilities. As a result, not being able to independently toilet oneself appears less accepted (and perhaps less acceptable) as a criterion for limiting community living opportunities.
Use of Special Equipment
Wheelchair use is considerably more prevalent in large facilities than in small facilities. Adjusting the NMES estimates to reflect the considerably greater number of persons of smaller community facilities and the somewhat smaller number of persons in larger facilities than estimated in NMES would nearly double the estimated wheelchair users in smaller facilities from an estimated 3,237 persons to an estimated 5,929 persons. Reported use of urinary catheters and communication boards/symbol systems as primary means of communication was so limited in the NMES sample that it was affected by reweighting.
Applying proportional estimates from NMES to the known populations of facilities as reported by the states has various effects on estimates of medical conditions. For circulatory conditions, reweighting would provide an estimate that slightly more people with mental retardation and related conditions and circulatory system conditions are living in smaller, community based residential facilities than in larger facilities, while in the original NMES estimates only 33.3% of residents with circulatory conditions are indicated to live in the smaller facilities. With proportional adjustments the estimated numbers of people with diabetes in small mental retardation facilities increased by 2,250 (or 82%), or an estimated 46.4% of all mental retardation facility residents with diabetes living in community-based settings (an increase from 29.9% in the original NMES estimates). Reweighting of the NMES sample also makes considerable difference in estimated proportion of residents with frequent constipation living in community settings. In the original NMES estimates, 16.4% of all residents in mental retardation facilities who suffered frequent constipation were in small facilities with reweighting that proportion would be 28.6%.
The proportion of deaths among smaller, community-based facility residents was estimated to be .9%. This was similar to the .8% death rates obtained for small facility residents in the 1977 and 1982 NCRF surveys (Lakin, Hill, & Bruininks, 1985). But the total number of deaths among residents in the smaller residential facilities is probably better estimated by reweighting the NMES sample to known number of residents. The adjusted estimate would be 1,067 deaths in smaller, community facilities as compared with the original NMES estimate of 615 deaths in these facilities.