There are at least three conditions that would have to prevail to make this or any similar alternative estimation procedure adequate and preferable to using original NMES statistics for estimating persons with mental retardation and related conditions in different sizes and types of residential facilities. These include the following:
States must more accurately report the total number of people making up the populations of facilities meeting the definitions employed in NMES than did the ILTCP, which served as the sample frame for NMES and is the basis for its population estimates. Based on the discussion in Part I of this report, this does appear to be the case.
The sample size of NMES must be sufficient to yield accurate estimates of facility and population characteristics for settings with 15 or fewer residents. The NMES sample of 326 facilities and over 1,000 residents in facilities with 3-15 "beds" appears more than sufficient to obtain reasonably accurate estimates of the proportional distributions reported for these facilities. Although, for certain data elements, the relatively low occurrence within the sample produced estimates of low reliability, in general relatively adequate sample size was maintained among the smaller facilities.
Sample members representing the approximately 65,000 community facility residents in the facilities contained in the sample frame must also be reasonably representative of those who were excluded from the sample frame and, thereby, the sample (both 1 and 2 resident places and the facility "types" underrepresented). It is extremely difficult to test whether this condition can be met satisfactorily. In general the residents of small facilities sampled in the 1987 NMES tend to be somewhat more impaired than residents of facilities participating in the 1982 NCRF. As such the NMES estimates of small community facility population characteristics tend to reflect what is known to have taken place within residential services nationwide since the 1982 NCRF. Since 1982 smaller facilities are known to have come to serve considerably more severely impaired people, as thousands of persons with severe and profound levels of mental retardation were released from public and private institutions to community facilities or have entered community facilities directly from their own homes. Table 38 compares estimated populations and proportions by level of mental retardation in the 1982 NCRF and the 1987 NMES, original and adjusted estimates.
The estimated proportional changes in small facility residents by level of mental retardation suggested are generally supported by census statistics gathered on the populations of state institutions. Between June 30, 1982 and 1987 state mental retardation institution populations decreased from 121,479 to 94,696 (White et al., 1989). During that period states reported a total of 43,189 discharges from state institutions. Based on the only available statistics on the placement of state institution discharges for FY 1982, FY 1985 and FY 1987 (the only years in which data were gathered), 50.67% of discharges went to community-based living arrangements other than a natural or adoptive home. In other words, an estimated 21,880 people were discharged to state institutions to community living arrangements between June 30, 1982 and June 30, 1987. If data on the level of mental retardation of FY 1987 releases (the only year available) are applied to these data, the estimated number and proportions of persons with different level of mental retardation entering community facilities would be as shown in Table 39.
Of course, not all releases to community facilities have resulted in successful tenure. In the only two years during the 1982-1987 period in which data were obtained on readmissions, FY 1985 and FY 1987, 33.9% and 32.5% of readmissions, respectively, were from people living in community facilities other than a natural or adoptive home. Adjusting data on total readmissions for FY 1982, 1985 and 1987 with the statistics on readmissions from community settings, and using data on the level of retardation of readmissions from FY 1987 (the only year available), the estimated number and proportion of persons with different levels of retardation leaving community facilities to return to institutions would be as shown in Table 39.
Of course, a limitation of these data is that they assume that people with more severe mental retardation released from institutions are as likely to be among the 51% going to community facilities as are released residents with less severe levels of mental retardation. Put another way, one might question whether it is possible that people with severe or profound mental retardation would be more likely to be among the 49% of institution discharges who did not go to community residential facilities. Unfortunately, the most recent data on this topic (1978) are too dated for contemporary analysis. However, among the estimated 14% of all institution discharges returning to a natural or adoptive home in 1978, no statistically significant differences were noted by degree of mental retardation. While available statistics do not prove absolutely that the populations of community mental retardation facilities have necessary changed in the absolute size and distribution as suggested by related movement statistics, it seems reasonable to estimate that the depopulation of state institutions alone has added over 18,000 people to community residential settings between 1982 and 1987, an estimated 6,000 of whom are profoundly retarded.
As important as these additions are to the number and characteristics of residents of community mental retardation facilities, persons coming from large public institutions comprise a significant minority of persons entering smaller residential facilities. In the 1982 NCRF statistics were gathered on previous place of residence of persons newly admitted between July 1, 1981 and June 30, 1982 to 88% of all facilities operating on June 30,1982. These statistics showed an estimated 13,030 new admissions to smaller community facilities in FY 1982, 27% came from large public facilities. Another 8% came from large private mental retardation facilities and 6% from other types of institutions (nursing homes, mental health facilities, hospitals, etc.). About 28% of new residents came directly from home or independent living situations and 31% came from other community facilities or moved to a new home with their existing residential household (Lakin, Hill, & Bruininks, 1985). Unfortunately no data exist on the characteristics of these now admissions. In addition statistics reported by states on the number of people in large nonstate residential facilities indicated a decrease of above 10,600 residents between June 30, 1982 and June 30, 1987 (Lakin et al., 1989). Presumably most of this number was made up of persons moving to community facilities.
Clearly the group most systematically underrepresented in the mental retardation facilities sample are persons in family/foster care settings. With an average size of 2.6 residents per "facility" (Lakin, Hill, & Bruininks, 198S), the majority of such facilities were automatically excluded from NMES when it was decided to exclude facilities of 1 and 2 residents. A large (unknown) proportion of the others were left unidentified because of the factors discussed in Part I. Given the exclusion of most foster care facilities which served an estimated 22,353 people on June 30, 1987, there is particular interest regarding the extent to which their residents might be represented in data gathered in NMES. Statistics obtained on the 17,147 residents of foster care facilities in 1982 showed that with respect to level of mental retardation foster care residents were quite similar to residents of other small facilities as shown in Table 40. While minor differences are apparent in the level of retardation of specialized foster care and other small facility residents in 1982, these differences were not large. However, age differences were substantial. While 37.4% of foster care residents were 21 years or younger, only 18.0% of other small facility residents were 21 years and younger. Therefore, with respect to NMES statistics, it seems clear that the exclusion of foster care homes of 1 and 2 residents and underrepresentation of the remainder has caused significant underrepresentation of children and youth in the sample and resulting population estimates. This underestimation appears to be about 3% of all residents, about 6,000-8,000 persons 21 years or younger, or an estimated 12%-16% of the expected number of persons of that age.
In summary, there is no way to clearly demonstrate how best to use the NMES statistics to estimate populations of persons with mental retardation and related conditions in mental retardation facilities, especially the smaller facilities. While there is overwhelming evidence that NMES has substantially underrepresented the populations of persons in small facilities, it remains the richest and most comprehensive data base on residential services for persons with mental retardation available. There is much evidence that the general characteristics of small community facility populations are shifting proportionally in the directions suggested by NMES. Unfortunately data do not exist to clearly guide adjusting NMES estimates to known total small facility populations so as to improve the ability to estimate the characteristics of the population. Nevertheless, some "reweighting" is inevitable in the many instances where population estimates needed and where NMES represents the single best data source of estimating the characteristics of residents, costs of residential services, and other data needed about mental retardation facilities. Simple efforts to do so will probably improve the ability of the NMES statistics to describe the population characteristics and residential services of persons living in small, community based residential settings. However, data to establish or justify specific procedures for doing so are not readily available.
Table 37. Characteristics of People in Different Facility Types1
|Small 15- Res||Large|
|(118,570)||Large Public (95,052)||All Large (137,113)|
|LEVEL OF MENTAL RETARDATION|
|Profound||13.6% (16,126)||59.5% (56,556)||46.3% (63,493)|
|Severe||23.5% (27,864)||20.2% (19,200)||19.2% (26,330)|
|Tries to hurt other||25.2% (29,880)||33.6% (31,937)||29.9% (41,003)|
|Tries to hurt self||19.4% (23,003)||23.6% (22,432)||28.4% (38,946)|
|Steals from others||15.0% (17,786)||17.2% (16,349)||16.0% (21,941)|
|Exposes self/has problem sexual behavior||12.1% (15,058||14.5% (13,783)||12.4% (17,004)|
|Gets lost/wanders||12.7% (15,058)||16.8% (15,969)||15.1% (20,707)|
|Unable to avoid dangerous things/places||18.9% (22,410)||31.8% (20,227)||25.6% (35,106)|
|Cries for long periods for no apparent reason||12.9% (15,296)||12.4% (11,786)||12.3% (16,876)|
|Gets upset/yells||49.6% (58,811)||54.5% (51,803)||51.6% (70,761)|
|Dresses with no difficulty/without help||62.6% (74,225)||27.3% (25,949)||38.4% (52,659)|
|Uses toilet with no difficulty/without help||86.0% (101,970)||51.7% (49,142)||60.4% (82,828)|
|Walks across room with no difficulty/without help||91.2% (108,136)||66.0% (62,734)||71.4% (97,913)|
|Wheelchair||5.0% (5,929)||29.8% (28,325)||23.1% (31,678)|
|Urinary Catheter||0.5% (593)||1.1% (1,046)||1.2% (1,646)|
|Communication board/symbols system||0.4% (474)||1.2% (1,141)||1.3% (1,783)|
|Circulatory conditions||12.2% (14,466)||9.9% (9,410)||10.3% (14,125)|
|Diabetes||2.0% (2,371)||1.6% (1,521)||2.0% (2,743)|
|Frequent constipation||11.5% (13,636)||31.3% (29,751)||24.8% (34,009)|
|Deaths||0.9% (1,067)||1.4% (1,331)||1.6% (2,194)|
Table 38. Comparison of 1982 NCRF and 1987 NMES Findings Regarding Small Facility Populations with Mental Retardation
|Small Facility Populations||% Mild/ Borderline||% Moderate||% Severe||% Profound|
|* Excludes 598 estimated people with related conditions but not mental retardation.|
Table 39. Estimated Additions to Community Facilities from State Institutions during the period from 1982 to 1987 by Level of Mental Retardation
|Change||Estimated Gain/Loss||Level of Mental Retardation|
|Moves from State Institution to Community||+21,880||+3,960 (18.1%)||4,770 (21.8%)||5,973 (27.3%)||7,177 (32.8%)|
|Moves from Community to State Institution||-3,420||-752 (22.0%)||-759 (22.2%)||-814 (23.8%)||-1,095 (32.0%)|
|Net Change||+18,460||3,208 (17.3%)||4,011 (21.7%)||5,159 (27.9%)||6,082 (32.9%)|
Table 40. Comparison of 1982 Foster Care Residents with Small Facility Resident Characteristics as Obtained in the 1982 NCRF and 1987 NMES
|% Mild/ Borderline||% Moderate||% Severe||% Profound|
|1982 Foster Care (NCRF)||25.9%||37.7%||26.0%||10.4%|
|1982 All Other Small (NCRF)||30.4%||37.3%||22.7%||9.6%|
|1987 Small (NMES Est.)||30.9%||31.7%||23.7%||13.7%|