Persons With Mental Retardation and Related Conditions in Mental Retardation Facilities: Selected Findings from the 1987 National Medical Expenditure Survey. Resident Characteristics

12/01/1989

The following tables present data on a range of diagnostic, medical and functional skills of residents of mental retardation facilities grouped by type of operation, ICF-MR certification status, and facility size. The estimates are from the Baseline Questionnaire.

Level of Retardation/Type of Related Conditions

Table 9, Table 10 and Table 11 present the levels of retardation or types of related conditions for mental retardation facility residents reported to have mental retardation, epilepsy, cerebral palsy, autism, and/or spina bifida. Under "mentally retarded" are presented the estimated distribution of residents by level of retardation for individuals indicated to have mental retardation. Under "Related Conditions Only" are the estimates of prevalence of certain conditions among sample members who were indicated to have epilepsy, cerebral palsy, autism or spina bifida, bid not mental retardation.

Persons with mental retardation. The NMES estimates indicated that 99% of the residents of mental retardation facilities who had mental retardation or related conditions, had mental retardation. The same proportion was found in both large and small facilities. It is notable, however, that of the persons indicated to have "mental retardation," 4% were classified as "borderline mentally retarded" or not technically within the range of measured intelligence (i.e., 10) currently recognized as indicating mental retardation.

People with profound retardation made up an estimated 37% of the residents in mental retardation facilities. They were concentrated in large facilities (46% of residents in those facilities), particularly in large government operated ones (60% of residents), and in ICF-MR certified facilities (49% of residents). About 18% of the residents of the 3 to 6 resident facilities were persons with profound retardation.

The overall prevalence of mild/borderline, moderate and severe mental retardation among residents of mental retardation facilities was quite similar (20.9%, 21.0% and 20.5% of all residents, respectively). The prevalence of severe mental retardation was relatively consistent across the various types of facilities examined (from a low of 17% of residents in government facilities with 800 residents to 33% in government facilities with 15 or fewer residents). The distribution of persons with mild/moderate mental retardation (including borderline) varied much more across facility categories. For example, while 62% of persons in facilities of 15 and fewer residents had mild/moderate mental retardation, only 18% of persons in facilities of 300 or more residents were classified as mild or moderately mentally retarded. Mild/moderate mental retardation had a much higher prevalence within non-certified residential facilities (64% of residents) than within ICFs-MR (30%).

People with conditions related to mental retardation (i.e., epilepsy, cerebral palsy, autism and/or spina bifida), but who were not also reported to be mentally retarded appeared to be rare among mental retardation facilities (an estimated less than 1%). Because individuals with related conditions only were represented by just 33 persons in the entire sample, estimates of their characteristics are subject to considerable error. However, among the sample epilepsy was the most commonly reported condition of persons who did not have mental retardation, but made up only an estimated 0.6% of all residents with mental retardation and related conditions. Although residents were rarely reported to have related conditions only, the following section shows these conditions very commonly accompanied mental retardation among the residents of mental retardation facilities. However, it is important to note that many persons with related conditions reside in facilities primarily serving populations with conditions other than mental retardation. A description of these individuals will be included in subsequent analyses of data on nursing and related care facility residents.

Related Conditions by Level of Retardation

Table 12, Table 13 and Table 14 present estimates of the prevalence of conditions related to mental retardation among residents with different levels of mental retardation. Specific conditions included are epilepsy, cerebral palsy, autism, spina bifida and deafness or blindness. Table 12 presents estimates for facilities by type of operation; Table 13 by ICF-MR certification and Table 14 by facility size.

Epilepsy. Approximately 29.6% of persons with mental retardation residing in mental retardation facilities were estimated to have epilepsy. The presence of epilepsy was clearly associated with the level of mental retardation. About 15% of persons with mild mental retardation were reported to have epilepsy as compared with 43% of persons with profound mental retardation. Persons with epilepsy were most likely to be in facilities of 16 or more residents (34% of residents had epilepsy), large government operated facilities (40% with epilepsy) and ICF-MR certified facilities (34% with epilepsy). Controlling for level of retardation, with the exception of persons with mild or borderline mental retardation, persons with epilepsy were more likely to be residing in larger facilities than persons whose medical records did not indicate a seizure disorder.

Cerebral palsy. An estimated 12% of persons with mental retardation and related conditions in mental retardation facilities were reported to have cerebral palsy. As with epilepsy, there was a clear association between cerebral palsy and level of mental retardation of residents. Cerebral palsy was noted in the medical records of an estimated 5.5% of the individuals with mild or borderline mental retardation, 6.4% of those with moderate mental retardation, 9.2% of those with severe mental retardation, and 19.5% of those with profound mental retardation. Related to this general association with level of retardation, persons with cerebral palsy were more likely to be found in facilities of 16 or more residents than in smaller facilities (13% versus 8%). The prevalence of cerebral palsy was estimated to be slightly higher in large private facilities than in large public facilities (15% vs. 12%). An estimated 13.5% of ICF-MR residents and 8.5% of residents of non-ICF-MR facilities had cerebral palsy.

Autism. An estimated 3.5% of residents of mental retardation facilities had autism noted in their medical records. The prevalence of reported autism was highest among persons with severe mental retardation (5.6%). Estimated rates of autism among persons with moderate and profound mental retardation were 3.3% and 3.6%, respectively. An estimated 1.4% of individuals with mild or borderline retardation were reported to be autistic. Only 5.4% of the persons reported not to be mentally retarded were reported to have autism, but this estimate was based on only 2 of 3,61 8 sample members. The estimated prevalence of autism was similar in large (16+ residents) and small facilities (3.7% and 3.0% respectively). The highest prevalence of autism was reported in larger nonprofit facilities (8.9%). ICF-MR certified facilities had a considerably lower reported prevalence of autism among its populations (2.5%) than did the noncertified facilities (5.4%).

Spina bifida. Spina bifida was estimated to be rare among the mental retardation facility populations. It was consistently reported to be below 1% for individuals of all levels of mental retardation and in all sizes and types of facilities.

Blind or deaf. An estimated 7% of persons in mental retardation facilities were blind and/or deaf. Prevalence of these conditions was associated with level of mental retardation; from 2.3% of persons with mild or borderline mental retardation to 13.8% of persons with profound retardation. Persons who were blind or deaf were more likely to reside in facilities of 16 or more residents (8.7% compared with 3.7% in smaller facilities). The prevalence of deafness or blindness among facility populations was closely associated with facility size (from 3.0% in facilities of 6 or fewer residents, and 4.2% in facilities of 7-15 residents, to 10.2% in facilities 300-799 residents, and 12.8% in facilities of 800 or more residents). About twice the proportion of persons in ICFs-MR were deaf or blind (8.8%) than in facilities that were not ICF-MR certified (4.3%).

Age Distribution of Residents

Table 15, Table 16 and Table 17 present estimates of the age distribution of persons with mental retardation and related conditions in mental retardation facilities. Age distribution estimates are provided for all residents and separately for those with mild/moderate levels of mental retardation, those with severe/profound mental retardation, and those who only had related conditions. It should be noted that the exclusion of facilities with 1 or 2 residents and the general underrepresentation of other small "family care" facilities has likely caused some degree of underestimation of the proportion of children and youth in mental retardation facilities. This was due to the somewhat greater proportion of children and youth in small family care settings than in other facilities (51% greater than all other facilities in the 1982 NCRF, Lakin, Hill, & Bruininks, 1985). Based on statistics from the 1982 NCRF it would appear likely the proportion of children and youth in all residential facilities in 1987, including those of 1 and 2 residents, was greater than the 15.5% estimated in the NMES. Adjustments for the undercounted smaller facilities and the eliminated 1 and 2 person placements, based on NCRF would suggest that children and youth (21 years and younger) made up 18.5% to 19.5% of the population of mental retardation facilities. While not insignificant, this magnitude of undercounting is relatively minor for the sake of this discussion. It is assumed that the estimates of the ages of the residents of mental retardation facilities obtained from NMES were generally accurate for facilities of 16 or more residents.

Like earlier studies, the NMES showed clearly the overwhelmingly adult population in mental retardation facilities. It estimated that only 15.5% of persons with mental retardation and related conditions in mental retardation facilities were persons 21 years and younger. Even the adjusted estimate of 18.5% to 19.5% was considerably less than the 24.8% found in the 1982 NCRF and 37.4% found In the 1977 NCRF (Lakin, Hill, & Bruininks, 1985). Data suggested continued decreases in the proportion and actual number of both children (0-14 years) and adolescents (15-21 years) in mental retardation facilities. The 1982 NCRF indicated that 9.1% of residents were children (0-14 years) as compared with 4.6% in the 1987 NMES. The 1982 NCRF facilities indicated 15.5% of residents were adolescents (15-21 years), as compared with 10.8% in the 1987 NMES.

At the other end of the life span populations of mental retardation facilities are aging. According to NMES 5.5% of mental retardation facility residents were 65 years or older. This compares with 5.0% 63 years or older in the 1982 NCRF and 4.1% in the 1977 NCRF (Lakin, Hill, & Bruininks, 1985). The middle-age bracket also continued to increase, with 19.9% of residents 40-62 years in 1977, 23.3% of residents 40-62 years in 1982 and 27.5% 40-64 years in 1987.

Age distributions within large and small facilities were quite similar. Private for profit facilities had the highest proportion of older residents, private nonprofit facilities had the highest proportion of younger residents. Only 13.6% of the population of large government facilities was made up of persons 21 years or younger. This compared with 22.0% in the 1982 NCRF and 35.8% of the 1977 NCRF. ICF-MR facilities had smaller proportions of children and youth than non-ICF-MR facilities (13.7% and 18.4% respectively). They also had a higher proportion of persons 65 years or older (5.8% vs. 4.8%).

Resident age distributions were associated with level of retardation. Resident populations indicated to have mild or moderate levels of retardation contained lower proportions of children and youth than did the populations indicated to be severely or profoundly mentally retarded (12.2% vs. 17.9%). This was not only generally true, but was true within all facility sizes and types. Conversely, higher proportions of older mental retardation facility residents were indicated to be mildly or moderately mentally retarded than were indicated to be severely or profoundly mentally retarded. Of all mildly/moderately retarded residents 9.4% were persons 55-64 years, and 6.7% were persons 65 years or older. Of all severely/profoundly retarded residents, only 6.3% were persons 55-64 years, and 4.3% were 65 years or older. These differences reflect the lower life expectancy of persons with profound mental retardation. But the generally increasing life expectancy of persons with mental retardation, the current efforts to avoid their unnecessary placements in nursing homes, and the presence in mental retardation facilities of about 20,000 persons in the 55-64 year age range will produce a great increase in the elderly population of mental retardation facilities by the end of this century.

The concentration of the residential population in early adulthood (22 to 39 years) was notable. While only 30.8% of the U.S. population was between 22 and 39 years at the time of this study, an estimated 51.6% of the population of mental retardation facilities in 1987 was in young adulthood. This bulge is the result of placement factors such as the relatively low placements of children and youth in residential settings, and relatively high numbers of placements of older people with mental retardation and related conditions in nursing homes, an estimated 13,000 according to the 1985 National Nursing Home Survey.

Activities of Daily Living (ADLs)

Table 18, Table 19 and Table 20 present estimates of the proportion of residents with mental retardation and related conditions who were reported to be able to perform activities of daily living independently, with special equipment, only with assistance or supervision from other persons, or not at all. Estimates are presented by type of operation (Table 18), ICF-MR certification status (Table 19) and facility size (Table 20).

Bathing/showering. An estimated 39.1% of persons with mental retardation and related conditions in mental retardation facilities were reported to be able to bathe or shower independently. Large differences were noted within all three groupings of facilities. The group of residents reported as least: likely to be able to bathe or shower independently were the residents of public institutions (22.2%); most likely were the residents of small nonprofit facilities (63.2%). Substantial differences were evident between large and small facilities generally (57.0% and 31.5%, respectively). Similar large differences were noted between ICF-MR certified facilities (28.4%) and non-certified facilities (57.7%). Generally the larger the facility, the smaller the proportion of its residents indicated as being able to bathe or shower independently. The primary exception was among the very smallest facilities (6 or fewer residents), which had somewhat higher proportions of dependent residents as indicated by all ADL ratings (and related impairments) than did facilities of 7-1 5 residents.

Dressing. An estimated 45.6% of residents with mental retardation and related conditions were reported to be able to dress themselves without assistance or supervision. Substantial differences were noted in the proportion of residents in different types of facilities able to dress themselves independently. Only 27.3% of residents of public institutions were reported to dress with assistance, as compared with 67.7% of small nonprofit facility residents. Rates of independent dressing were much lower in ICFs-MR than in non-certified facilities (36.2% versus 62.2%), but were not appreciably different between small ICFs-MR and small non-certified group homes (61.8% and 63.1%, respectively). With the exception of the smallest facilities (6 or fewer residents), which had somewhat more impaired populations than the 7-15 resident group homes, as facility size increased reported independence In dressing decreased, from 68.4% of residents of facilities with 7-15 residents to 25.9% of residents of facilities with 800 or more residents.

Toileting. Over two-thirds of the residents with mental retardation and related conditions were reported to be able to use the toilet independently. Over half the residents of all types of facilities were reported to be independent in toileting, ranging from 51.7% of public institution residents to 90.1% of residents of small, private nonprofit group homes. The difference between ICFs-MR and noncertified facilities in the proportion of residents independent in toileting was also substantial (59.1% and 83.7%). However, no differences were noted between small ICFs-MR and small noncertified group homes (86.6% and 85.7%, respectively). An estimated 9.4% of residents were reported to not use the toilet at all. Proportions ranged from 16.1% of public institution residents to 1.2% of small, private nonprofit facility residents. An estimated 2.1% of small facility and 12.5% of large facility residents were reported not to use the toilet, with the highest proportion in facilities of 300 or more residents (14.3%).

Getting in and out of bed. An estimated 80.3% of residents with mental retardation and related conditions were reported to be able to get in and out of bed independently. Reported rates varied from 68.9% of public institution residents to 96.6% of small, private nonprofit facility residents. Three-quarters (74.4%) of large facility residents and 94.0% of small facility residents were reported to be able to get out of bed independently. While the proportion of all ICF-MR residents able to get out of bed independently was consistently lower than the proportion of noncertified facility residents (74.3% and 90.7%, respectively), a slightly higher proportion of residents of small ICFs-MR than residents of small noncertified group homes were reported to be able to get out of bed independently (96.6% and 92.7%, respectively). An estimated 4.6% of mental retardation facilities residents were reported to not assist in getting themselves out of bed even with the support of another person or of equipment. The highest proportion of the individuals who were reported to be totally dependent in getting out of bed was in large public institutions (7.0%); the lowest proportion was in small private nonprofit facilities (.5%).

Feeding self. An estimated 77.2% of residents with mental retardation and related conditions were reported able to feed themselves without assistance. Proportions of residents eating independently ranged from 64.6% in state institutions to 92.9% in small, private nonprofit facilities. Large facility residents were reported to be independent in eating considerably less often than were small facility residents (71.5% and 90.7%, respectively). ICF-MR residents were considerably less often reported as independent than were non-ICF-MR residents (70.1% and 89.5%, respectively), although little difference was noted among residents of small ICF-MR and small non-ICF-MR facilities (88.9% and 91.6%). An estimated 6.6% of mental retardation facility residents were reported to be unable to feed themselves even with the supervision or assistance of another person or equipment. This group included 11.4% of public institution residents, 9.2% of ICF-MR residents, and 8.9% of larger facility residents (i.e., 16 or more residents), but only 1.3% of residents of facilities with 15 or fewer residents.

Walking across room. Most residents with mental retardation and related conditions were reported to be able to walk across a room without physical assistance from other people or equipment. Another 12% were reported able to do so with the aid of equipment, but without assistance from another person. Ambulation with the assistance of another person (independent with or without equipment) was reported for two-thirds (67.2%) of the residents of public institutions and 94.7% of the residents of small, private nonprofit facilities. Residents of large facilities were much less likely to be reported as ambulatory without personal assistance than were residents of small facilities (72.7% and 92.1%, respectively). Residents of ICFs-MR were less likely to be ambulatory than residents of noncertified facilities (71.9% and 90.0%, respectively), except again that small ICF-MR and small noncertified facility residents were reported to be very similar on this variable (93.9% and 91.2%, respectively). The proportion of residents reported to be unable to walk across the room even with the assistance of another person or equipment was highest among public institution residents (21.4%), large facility residents (17.5%), especially facilities of 76 or more residents (20.5%), and ICFs-MR (17.7%). Proportions of these functionally nonambulatory residents were lowest among small facilities generally (2.9%) and especially small ICF-MR certified facilities (1.3%).

Instrumental Activities of Daily Living (IADLs)

Table 21, Table 22 and Table 23 present estimates of the proportion of persons with mental retardation and related conditions in mental retardation facilities who were reported to perform different instrumental activities of daily living independently (with or without difficulty), with help, or not at all. Estimates are presented by type of operation of facilities (Table 21), ICF-MR certification status (Table 22), and facility size (Table 23).

Use of telephone. An estimated 25.8% of residents of mental retardation facilities were reported to use a telephone independently. Another 25.5% were reported to use a telephone with assistance. Independent telephone use was lower in larger facilities (16+ residents) than in smaller facilities (20.5% and 38.5%, respectively). It was lowest in large public facilities (8.5%) and highest in small, private for profit facilities (42.3%). ICFs-MR had a much lower proportion of people reported to use the telephone independently than did non-certified facilities (15.6% and 41.6%, respectively), but no difference was found between small ICFs-MR and small noncertified facilities (38.7% and 38.5%, respectively). An estimated 48.7% of persons with mental retardation and related conditions were reported not to use a telephone at all, even with "help of any kind." By far the largest proportion of persons never using the telephone lived in large public facilities (73.9%); the smallest proportion lived in small, private nonprofit facilities (23.9%). While a much larger proportion of ICF-MR residents were reported to never use a telephone than residents of noncertified facilities (61.0% and 29.8%, respectively), the proportions were essentially equal for small facilities with and without ICF-MR certification (28.8% and 27.7%, respectively).

Managing money. An estimated 11.4% of persons with mental retardation and related conditions in mental retardation facilities were reported to manage their money ("such as keeping track of expenses or paying bills") without assistance. Persons reported independent in managing their money included 16.6% of smaller facility residents and 9.3% of residents of larger facilities (16+ residents). The smallest proportion of residents independently managing their money was reported by public institutions (5.1%); the largest was in small, for profit facilities (26.9%). An estimated 27.8% of all residents were reported to manage money with assistance. Substantial differences were reported between larger and smaller facilities (21.3% and 43.2%, respectively). An estimated 60.8% of residents did not participate in money management activities. Large public facilities had the highest proportion of residents who were not involved in either independent or assisted money management (81.2%), while small private facilities had the lowest (38.9%). ICF-MR residents were much less likely than non-ICF-MR facility residents to be involved in managing their own finances (70.8% and 45.5%, respectively), although no differences were noted between small ICF-MR and small non-ICF-MR facilities (40.9% and 40.0%, respectively).

Shopping for personal items. An estimated 15.6% of residents of mental retardation facilities were reported to "shop for personal items such as toilet Items or medicines" without help. Proportions of people reported to shop for personal items independently ranged from 6.0% of residents of large public facilities to 31.3% of residents of small for profit facilities. An estimated 12.3% of all larger facility residents and 23.6% of all small facility residents were reported to be independent in this activity. ICF-MR residents were considerably less likely to be independent in shopping for personal Items than residents of non-ICF-MR facilities (8.7% and 26.4%, respectively). An estimated 45.6% of all residents of mental retardation facilities were reported not to engage in shopping for personal items at all, even with assistance. Proportions of residents reported not to be involved in shopping for personal items ranged from 69.1% of large government facility residents to 20.1% of small, private nonprofit residents. Rates of independent and assisted involvement in shopping for personal items were considerably higher in private nonprofit facilities (75.7%), than in private for profit (63.7%), or publicly operated facilities (34.1%). A much smaller proportion of ICF-MR residents than non-ICF-MR residents were involved in shopping for personal Items independently or with assistance (42.7% and 72.4%, respectively). However, no differences were found between small ICFs-MR and small noncertified facilities in the proportion of residents involved in shopping for personal items (76.3% and 75.6%, respectively).

Use, of personal or public transportation. A substantial minority (17.3%) of residents of mental retardation facilities were reported to be independent in getting around the community by using personal or using public transportation. Presumably few sample members used personal transportation "to get around the community," but the use of personal and public transportation was combined in the NMES instrument Persons reported to use personal or public transportation to get around the community included 12.8% of residents of larger facilities (16+ residents) and 28.0% of residents of small facilities. Lowest rates of independent use of personal or public transportation to get around the community were reported for residents of larger public facilities (5.8%); the highest rates were reported for residents of small private for profit facilities. ICF-MR residents were much less likely to be able to use private or public transportation independently than residents of non-certified facilities (9.3% and 29.6%, respectively).

An estimated 37.8% of residents of mental retardation facilities were reported not to get around the community "at all," with or without assistance by using personal or public transportation. The highest proportion of these individuals were residents of public institutions (55.8%), the lowest proportions were in small public facilities (10.1%) and small, private nonprofit facilities (15.2%). There was a major difference in the proportion of residents of large (16+ residents) and small facilities who got around the community by driving or using public transportation independently or with assistance (46.1% and 17.9%, respectively). ICF-MR residents were much more likely than residents of noncertified facilities to riot use private or public transportation to get around town either independently or with help (48.0% and 22.0%, respectively). Differences between small ICFs-MR and non-ICFs-MR were negligible (16.8% and 18.4%, respectively).

Notable differences were found among types of facilities in the extent to which assistance was provided to residents who were not independent to enable them to use private or public transportation. For example, of the residents of small for profit facilities who did not use private or public transportation independently (65.1% of all residents), only 62.8% were provided assistance which permitted them to engage in the activity. In contrast of the small private nonprofit facility residents who did not perform the activity independently (75.1% of all residents), 79.9% received assistance which permitted them to engage in the activity. Among small publicly operated facilities, 79.9% of residents did not perform the activity independently, but 87.5% of these individuals were reported to receive assistance which permitted them to engage in the activity.

Disturbing Behavior and Moods

Table 24, Table 25 and Table 26 present estimates of the proportion of residents with mental retardation and related conditions exhibiting certain types of disturbing behavior "sometimes" or certain moods "frequently." Estimates are presented by facility type (Table 24), ICF-MR certification status (Table 25), and facility size (Table 26). The statistics on disturbing behavior included all members of the sample. Questions regarding "moods" were not asked about residents with profound mental retardation. Unfortunately, the absence of frequency and severity indicators for these behaviors and moods makes interpretation of the statistics somewhat difficult.

Gets upset/yells. About half (51%) of residents were reported "sometimes" to get upset and yell. Considerable consistency was noted across the different facility types on this variable. An estimated 49.6% of residents of small facilities and 51.6% of residents of large facilities exhibited such behavior on occasion. Small differences were noted between ICF-MR residents and those of noncertifled facilities (53.6% versus 47.1%) and among facilities of substantially different sizes (50.1% in facilities of 6 or fewer residents and 56.4% In facilities with 800 or more residents).

Tries to hurt others. An estimated 28.5% of residents were reported to sometimes attempt to hurt others physically. Again relatively consistent rates were reported across facility types. Private facilities noted rates somewhat lower than public facilities (24.5% and 33.9%, respectively). Large facilities noted rates somewhat higher than small facilities (29.9% and 25.2%). Higher proportions of ICF-MR residents were reported to be aggressive toward others than were residents of non-certified facilities (31.7% and 23.6%). Comparable statistics from a 1979 National Survey of Residential Facilities (NSRF) Indicated that 16.3% of 965 private facility residents and 30.3% of 953 public facility residents attempted to injure others (Hill, Bruininks, & Lakin, 1983).

Tries to hurt self. An estimated 22.4% of residents with mental retardation and related conditions were reported "sometimes" to try to hurt themselves. The proportion of residents attempting self-injury was somewhat higher in public facilities (28%) than in private facilities (20%). Differences between large and small facilities were relatively small (23.6% and 19.4%, respectively). Self-injurious behavior was reported to be more prevalent in ICFs-MR (25.5%) than in non-certified facilities (17.6%). Comparable statistics on self-injury in the 1979 NSRF (asking whether the individual has a "problem" with self-injurious behavior) indicated episodes of self-injury among 22% of the public facility sample and 11% of the private facility sample (Hill, Bruininks, & Lakin, 1983). The proportional increase in prevalence of self-injury in private facilities seems generally parallel with widespread movement of people with severe cognitive and behavioral impairments to community-based facilities since 1979, with the reported prevalence of self-injury among sample members with severe or profound mental retardation being 30% as compared with 17% for all other sample members. The overall increase in reported self-injury between the 1979 survey and the 1987 NMES was likely affected by the distinction between a "problem" with self-injury (as asked in the 1979 survey) and "sometimes exhibiting self injury" (as asked in NMES).

Steals from others. An estimated 15.7% of residents were reported to steal from others on occasion. Reported rates showed considerable consistency across facility types and sizes. Among large facilities, stealing was reported for 16% of residents as compared with 15% for small facility residents. ICF-MR rates were 17%, as compared with 14% in noncertified facilities.

Exposes self/Has problem sexual behavior. An estimated 12.4% of residents were reported to expose themselves or to exhibit other problem sexual behavior. While the proportion of residents exhibiting such behavior was slightly higher in public than in private facilities (14.7% and 10.7%), rates were very nearly the same in small and large facilities (12.1% and 12.5%). Slightly higher rates were reported in ICFs-MR than in noncerfified facilities (13.7% and 10.5%).

Gets lost/wanders. An estimated 14.4% of persons with mental retardation and related conditions were reported to have problems with wandering and/or getting lost. Rates of reported problems of this type were quite consistent across the various types and sizes of facility. The lowest reported rate was 11.1% in larger for profit facilities the highest was 16.8% in large public institutions.

Unable to avoid dangerous things/places. An estimated 23.6% of residents were judged by careproviders to present problems because of their being unable to avoid dangerous things and/or places. This type of "problem behavior" was directly related to severity of cognitive impairment. Rates were higher in public institutions (31.8%), ICFs-MR (28.3%), and facilities with 300 or more residents (33.0%). Although there were differences between small and large facilities in this reported problem (18.9% and 25.6%, respectively), the degree of difference, which might be expected to be reflected in requirements for supervision, was not notably large. On the other hand, different residential environments likely pose different amounts of "dangerous things and/or places" for residents to avoid.

Cries for no apparent reason. An estimated 12.5% of residents with mental retardation and related conditions were reported by careproviders to cry for long periods of time for no apparent reason. Differences in rates reported across facility types and sizes were relatively small.

Moods

Frequently worried/apprehensive. An estimated 31.4% of persons with mild to severe mental retardation or related conditions in mental retardation facilities were reported to be frequently worried or apprehensive. Reported rates were generally quite similar across facility types and sizes, although slightly higher among private facilities than public (32.7% and 28.0%). Estimated rates of frequent worry and apprehension were also consistent across facilities of different sizes. The notable exception was facilities with 800 or more residents, where the rate was less than one-half those of other facilities. The low reported estimate of apprehension among residents of these facilities may have been affected by the relatively small number of remaining sample members when residents with profound mental retardation (63% of the total) were excluded from the questions regarding mood.

Frequently unresponsive or withdrawn. An estimated 18.5% of persons with mild to severe mental retardation or related conditions in mental retardation facilities were judged by their careproviders to be frequently unresponsive or withdrawn. Reported rates were generally similar across facility types with the lowest rates reported in small nonprofit facilities (14.6%) and the highest rates reported in public institutions (24.3%). Differences between ICFs-MR and other facilities were small.

Frequently impatient or annoyed. An estimated 42.5% of persons with mild to severe mental retardation or related conditions in mental retardation facilities were reported by their careproviders to be frequently impatient or annoyed. Reported rates were highest for public facilities especially the large ones (50.7%). They were lowest in nonprofit facilities especially the small ones (34.6%).

Frequently suspicious. An estimated 20.3% of persons with mild to severe mental retardation or related conditions were reported to frequently exhibit sense of suspicion. Reported rates were highest in the for profit facilities (26.4%) and lowest in the private nonprofit facilities (14.2%). Rates for public facilities (20.0%) were similar to the all facility average. Slightly higher rates were reported in small non-ICF-MR facilities than in small ICFs-MR (20.6% and 16.2%, respectively).

Medical Conditions by Age

Table 27, Table 28 and Table 29 present estimates of the prevalence of certain medical conditions among residents of mental retardation facilities. Estimates are presented by facility operation (Table 27), ICF-MR certification status (Table 28), and facility size (Table 29). Because of the association of these medical conditions with aging, separate estimates are presented for residents 64 years and younger and 55 years and older.

Comatose. None of the 3,618 members of the sample was reported to be comatose. Therefore, "comatose" was omitted from the following tables.

Circulatory conditions. Circulatory conditions, including present diagnoses of high blood pressure, hardening of arteries, or heart disease, or past occurrence of a stroke or heart attack, were reported for an estimated 11% of residents with mental retardation and related conditions. This overall rate is considerably less than the rate of 20.8% obtained in the 1985 National Health Interview Survey for the general population. As expected, circulatory conditions were considerably more common among those 55 and older than among the younger residents (31.4% and 7.8%, respectively). Because mental retardation facilities house a lower proportion of older persons than are found generally in the population (e.g., 5.5% of mental retardation facility residents compared to 11.5% of the general population are 65 years or older), the somewhat lower rate of circulatory disorders among mental retardation facility residents might be expected. Rates of circulatory conditions were also somewhat higher for persons in the smaller facilities. These differences were noted despite a slightly older population in the larger facilities. Circulatory conditions were reported to be slightly more common among the population of community based facilities (those with 15 or fewer residents) than among the populations of larger facilities for both the 54 years and younger group of residents (9.3% and 7.2%) and for those 55 and older (12.2% and 10.3%). Of all facilities those most likely to have residents with circulatory conditions were the very smallest, those with 6 or fewer residents (12.6% of residents). Facilities with the highest rates of circulatory conditions among residents 55 years and older (41%) were also the smallest facilities (6 or fewer residents). An estimated 38.3% of residents 55 and older in institutions of 300 or more residents were reported to have circulatory conditions. Circulatory conditions of residents were not significantly associated with ICF-MR certification status of the facilities in which they lived.

Arthritis or rheumatism. An estimated 4.6% of residents of mental retardation facilities were reported to have arthritis or rheumatism. This compares with an estimated 12% of the total U.S. population reported to experience limitations from arthritis and rheumatism in the 1985 National Health Interview Survey. The magnitude of this difference cannot be explained by the somewhat younger population of mental retardation facilities than with the population as a whole. The estimated prevalence of arthritis and rheumatism among persons 55 and younger in mental retardation facilities (2.2%) is less than half of the estimated U.S. prevalence of arthritis and rheumatism in the U.S. population of persons under 45 years (5.4%). It is likely that differences in reported prevalence were affected by the type of responses gathered in the National Health Interview Survey (self-report with some "self-diagnosis" likely) and the NMES (reports of care providers). As in the general population, within the NMES sample arthritis and rheumatism were very highly related to age, 6 times as great among those 55 and older than among those 54 and younger. The estimated prevalence of arthritis and rheumatism among persons 55 years and older in mental retardation facilities (20%) was also lower than the estimated 25.5% reported for the general population 45 years and older in the National Health Interview Survey. Some differences were noted in the prevalence of arthritis and rheumatism for different sizes and types of facilities, particularly among persons 55 years and older. Within the older age group, 31.4% of people in facilities of 6 or fewer residents and 25.3% of those in facilities of 15 and fewer residents were reported to have arthritis or rheumatism. This compared with 18% of older persons in facilities of 16 and more residents and only 15.3% in facilities of 76 or more residents. To some extent these differences were likely to be associated with the ability of residents to communicate about these conditions, and, perhaps, the extent to which careproviders are able to identify and report the symptoms of these conditions.

Diabetes. The estimated prevalence of diabetes among residents of mental retardation facilities was 2.0%. This compares with the National Health Interview Survey estimate of 2.6% of the U.S. population. However, there is a very high association of diabetes with aging (e.g., the rate among 18-year olds is one-fifth the rate among 45-64 years and one-tenth the rate of people over 65), and the difference in estimated prevalence between mental retardation facilities and the general population can be attributed largely to the generally younger ages of mental retardation facility residents than members of the general population. Because of overall low rates of diabetes in the residential populations, cross facility comparisons have low precision of estimate. But in general, estimates showed consistency by facility type, ICF-MR certification status and facility size.

Cancer. Cancer was rare among the residents of mental retardation facilities. Again, the small number of individuals with cancer in the sample limited the precision of estimates across facility groups. The NMES estimated that 1.2% of residents in mental retardation facilities have some form of cancer. Estimated rates varied by age groupings from .4% of persons 54 and younger to 6.8% of persons 55 and older.

Frequent constipation. Frequent constipation was reported as a problem affecting 20.9% of residents of mental retardation facilities. Unlike the other medical conditions discussed above, frequent constipation was not associated with age. However, it is highly related to severity of mental impairment and more specifically associated with complications affecting amount of movement and the amount of upright positioning and mobility. In addition, severe mental impairments are often associated with neuromuscular disorders and abdominal muscle weaknesses which substantially contribute to constipation. Other contributors to constipation are relatively low fluid intake and general diet.

The strong association between frequent constipation and severity of impairment, especially for types or levels of Impairment associated with restrictions in movement and mobility, was evident in the reported chronic constipation of people in different types of residential facilities. Chronic constipation was noted for 31.6% of public institution residents and 30.6% of all public facility residents, which have much higher proportions of residents with profound mental retardation and mobility impairments. Much lower rates of chronic constipation were reported in private facility residents (15.4% private for profit and 10.6% of private nonprofit). Frequent constipation was noted for 26.4% of ICF-MR and 11.1% non-ICF-MR facility residents. Reported rates of chronic constipation ranged from 11.5% of the residents of small mental retardation facilities (15 or fewer residents) to 32.1% in facilities of 300 or more residents.

Obesity. About 13.2% of residents in mental retardation facilities were reported to be obese ("being very overweight"). Similar rates were reported for facilities of different types of operation: 14.9% in private for profit, 13.7% in private nonprofit and 12.0% in publicly operated facilities. Small facilities (15 or fewer residents) reported lower rates of obesity among residents 55 years and older than did larger facilities (12.7% and 17.3%, respectively). Residents in larger facilities who were 54 years or younger had lower rates of obesity than did residents of smaller facilities (11.7% and 15.4%). Smaller ICFs-MR had considerably lower rates of obesity among their residents than smaller facilities without certification (10.6% and 17.3%).

Use of Special Equipment and Devices

Table 30, Table 31 and Table 32 present estimates of the use of various kinds of special equipment and devices by residents of mental retardation facilities. Estimates are provided for type of facility operation (Table 30), ICF-MR certification status (Table 31), and facility size (Table 32).

Corrective lenses. An estimated 30.7% of residents of mental retardation facilities wore corrective lenses. Very substantial differences were noted between large and small facilities in the proportion of residents wearing corrective lenses (24.8% and 45.2%, respectively). Corrective lenses were least commonly worn by residents of large public facilities (15.8%). They were worn by 35.8% of large private facility residents, and 45.4% of small private facility residents. ICF-MR residents were considerably less likely than noncertified facility residents to wear lenses (23.5% and 41.6%).

Hearing aids. Hearing aids were worn by only an estimated 3.6% of residents of mental retardation facilities. They were more often worn by residents of small facilities (6.4%) than large facilities (2.5%).

Special underwear or diapers. An estimated 15.5% of residents of mental retardation facilities wore special underwear or diapers. Use was considerably higher among large facility residents (19.2%) than small facility residents (6.5%). Use was highest among public institution residents (23.9%) and lowest among residents of small, private nonprofit facilities (4.1%). An estimated 19.7% of ICF-MR residents and 9.2% of residents of noncertified facilities wore special underwear or diapers.

Wheelchair. An estimated 17.9% of all residents used wheelchairs. Use varied from 23.1% of residents in large facilities (29.8% in large public facilities) to 5.0% of residents in small facilities (3.6% in small private nonprofit facilities). ICF-MR residents were more likely to use wheelchairs (24.5%) than residents of noncertillied facilities (7.9%), but residents of small ICF-MR facilities were less likely to use wheelchairs than residents of other small facilities (3.3% and 5.8%).

Walker, cane or crutches. An estimated 4.5% of residents of mental retardation facilities used walkers, canes or crutches to aid them in walking. No substantial differences were noted by type or size of facility, although small private for profit facilities did have higher utilization rates than other small facilities (5.7% and 2.8%). Large, private non-profit facilities had rates of utilization higher than other large facilities (6.4% and 4.5%). No differences were noted by ICF-MR status.

Special dishes, cups, utensils. An estimated 14.7% of persons with mental retardation and related conditions used adapted dishes, cups and/or utensils to aid them in feeding themselves. Persons in large facilities were considerably more likely than persons in small facilities to use adaptive utensils for eating (18.3% and 5.9%). Persons in large public institutions were most likely to use adaptive utensils for eating (24.0%). ICF-MR residents were considerably more likely to be provided with special dishes, cups, and utensils than residents of noncertified facilities (20.2% and 6.3%).

Mechanical devices for eating. Mechanical devises to assist residents with eating were rarely used. Only an estimated 1.1% of residents were provided with such equipment.

Velcro fasteners or snaps for clothing. Velcro fasteners and snaps as an adaptation for persons who have difficulty with buttons and zippers were provided for an estimated 12.4% of residents of mental retardation facilities. These adaptations were most likely to be used in public facilities (17.9%), especially large public facilities (18.3%), and ICF-MR certified facilities (15.8%).

Symbol systems/communication boards. Symbol systems or communication boards were used as the primary means of communication by only 1.0% of residents. (Information was not gathered on the use of communication systems as supplements to primary use of spoken or signed language). Use of these alternative communication methods was similarly low among different categories of facilities, ranging from 1.3% in large facilities to 0.4% In small facilities, with no appreciable differences by type of facility.

Shower seats or tub stools. An estimated 14.7% of persons with mental retardation and related conditions used seats or stools for bathing/showering. Such devices were more commonly provided in large facilities than small (18.0% and 6.6%, respectively). They were most commonly used by residents of large public facilities (21.7%).

Portable toilets. Portable toilets were not frequently used by residents of mental retardation facilities (3.2%). They were more commonly used for residents of large facilities (4.2%), including 5.4% of residents of large public facilities and 5.1% of residents of large ICFs-MR. Portable toilets were used by only an estimated .5% of residents of small private facilities.

Urinary catheter. Urinary catheters were rarely used by the residents of mental retardation facilities (1.0%). Estimated use was 1.4% or lower in each of the different sizes and types of facilities, except in public institutions with 800 or more residents (2.2%).

Colostomy bag. Colostomy bags were very rarely used by residents of mental retardation facilities. Only .3% of residents were estimated to use colostomy bags, with no significant differences noted among facility types or sizes.

Employment Status and Wages

Table 33, Table 34, and Table 35 present estimates of the percentages of residents of mental retardation facilities working for pay, their place of employment and their average hourly wages. These tables include estimates only for residents 18 years or older. Estimates are provided for residents by type of operation of the facility (Table 33), ICF-MR status (Table 34), and facility size (Table 35).

Works for pay. An estimated 38.8% of persons with mental retardation and related conditions living in mental retardation facilities were employed for pay. Proportions of residents employed for pay ranged from 59.6% of residents of small facilities, including 74.4% of small, private nonprofit facility residents, to 30.2% of large facility residents, including 25.4% of large public facility residents. ICF-MR residents were much less likely to have paid work than residents of non-certified facilities (32.1% and 49.1%, respectively), although the proportion of small ICF-MR and small non-ICF-MR residents with paid employment was essentially the same (60.6% and 59.2%).

Location of employment. An estimated 26.3% of residents of mental retardation facilities worked for pay off the grounds of the residential facility in which they lived. This represented 67.8% of all employed residents. Major differences were noted among facility types in location of employment, with 92.6% of small facility paid workers being employed away from the facility as compared with 47.7% of paid workers living in large facilities. ICF-MR residents with paid jobs were much less likely to have jobs away from the residence than were residents of noncertified facilities (50.8% and 85.1%, respectively). Not only were residents of institutions with 300 or more residents least likely to have a paid job (25.6%), but only an estimated 4% had a paid job away from the residential facility.

Type of employment. Sheltered workshops were the primary source of employment for residents of mental retardation facilities. An estimated 29.8% of mental retardation facility residents worked in sheltered workshops. This represented an estimated 76.8% of all residents working for pay. Although, as noted above, the different types of facility differed greatly in the proportion of their adult residents working in any type of setting for pay, the proportion of all workers who were employed in sheltered workshop settings was fairly consistent across facilities, with between 67% and 87% of employed residents employed by sheltered workshops. Only 3.0% of all residents (7.7% of employed residents) were in supported work programs, and even fewer (1.4%) were in competitive employment settings. Residents of small public facilities and nonprofit facilities of all sizes were most likely to be in supported or competitive employment (8.4% and 7.3%, respectively). Work for pay other than sheltered, supported or competitive employment, most frequently "in facility" work of various types, was reported for 4.8% of residents and was most common for private nonprofit facility residents (8.1%).

Work with nonhandicapped people. A very small proportion of residents of mental retardation facilities worked with persons who are not handicapped (7.1% of all residents and 18.3% of employed residents). A higher proportion of small facility residents worked with nonhandicapped persons than did large facility residents (10.9% and 5.6%, respectively). Only an estimated 18% of paid workers from both large and small facilities were employed in settings that also had nonhandicapped workers. Of all facility types, small ICFs-MR had the highest percentage of all residents (15.8%) and the highest proportion of employed residents (26.1%) in integrated employment settings.

Hourly wages. The estimated average hourly wage for paid workers living in mental retardation facilities was $125 per hour. (Unfortunately NMES did not request information on total hours worked so as to permit estimations of total income from work.) Average wages varied relatively little by size of the residence in which people lived, with employed residents of small facilities averaging $1.29 per hour and employed residents of large facilities averaging $1.21 per hour. Considerable variability was noted in the average hourly wages of workers living in various types of facilities (from $1.02 for public institution residents to $1.48 for residents of large private facilities). ICF-MR residents with jobs averaged $1.16 per hour as compared with an average of $1.34 for residents of noncertified facilities. Of course, two of the major factors in the earnings of persons sampled are capacity for productivity and provision of opportunity to work for pay. These two factors did not appear to be equally distributed among the various types of residential facilities.

While there is not consistent association between wages and type of residence, there was a strong association between wages and type of employment. People in sheltered work averaged $1.02 per hour and had the lowest average pay of all types of workers in all sizes and types of facilities studied. Sheltered workshop wages averaged $1.06 per hour in small facilities and $.98 per hour in large facilities. People in nonsheltered work arrangements earned considerably more than the sheltered workshop employees, but because sheltered work was by far the most frequently used type of work (67.8% of workers), workshop wages were the primary factor in the low average wages of people with mental retardation and related conditions in mental retardation facilities. People involved in supported employment averaged $2.15 per hour ($2.21 in small facilities and $2.09 in large facilities). Average wages in supported employment were between average wages received for sheltered employment and competitive employment for people living in all types and sizes of facilities. The average hourly wage for persons in competitive employment was $3.87 per hour ($3.77 for small facility residents and $3.93 for large facility residents). In addition an average of $1.35 per hour was derived from the "other" employment arrangements noted for about 4.8% of residents. Most of the persons with "other" paid jobs had "in facility" jobs.

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