The limitations noted above notwithstanding, the NMES Institutional Population Component, including these initial data, as well as the service utilization, costs, resident movement and other data yet to be released, is an important data base for understanding the characteristics, needs and services of persons with mental retardation and related conditions in long-term care settings. In the following paragraphs a few of the more notable findings from these initial NMES data analyses are highlighted.
Access to community living opportunities is growing for persons with all types and degrees of mental retardation and related conditions.
One of the most striking findings from this study was the rapid increase in the number of persons with severe and profound mental retardation now living in community settings. To exemplify, from 1982 to 1987 the number of persons with profound mental retardation living in community settings increased by about 10,000 to an estimated 16,000. Of course, such movement was largely inevitable if deinstitutionalization were to continue, because by 1982, after years of selecting the least impaired public institution residents for release to community settings, institutional populations had become primarily composed of people with profound mental retardation and/or other severe impairments. Discharge of these individuals, once considered a "residual population," was the only way to continue the deinstitutionalization movement. Still documentation of this shift was an important finding of NMES. Despite these shifts large public institutions remained the typical residential experience for persons with profound mental retardation living outside their family home. Persons with profound mental retardation in public residential facilities outnumbered persons with profound mental retardation in community facilities by more than 3 to 1. Still many thousands of individuals with profound mental retardation and/or other severe impairments living in the community settings are demonstrating on a daily basis the viability of community living for virtually all persons with mental retardation and related conditions, whatever the nature of those conditions and however severe they may be. Despite the rapid increase in community living opportunities for people with severe mental impairments about 91,000 people still live in large public institutions, almost all of whom have severe and/or multiple impairments. Continued deinstitutionalization will obviously require augmented services and technical and financial supports to assure that the needs of these individuals are responded to appropriately.
The population of mental retardation facilities was overwhelmingly adult and is getting progressively older.
In 1977 about 37.4% of persons in mental retardation facilities were 21 years or younger. By 1982 that proportion had decreased to 24.8%. Adjusted estimates from this study indicate that about 19% of persons in mental retardation facilities were 21 years or younger. At the other end of the life span there was an increasing number of older persons, increasing from 4.1% to 5.0% of residents being 63 or older from 1977 to 1982, to 5.5% being 65 or older in 1987. Similarly the middle-age bracket continued to grow, from 19.9% of all residents being 40-62 years in 1977, 23.3% being 40-62 years in 1982 and 27.5% being 40-64 years in 1987. These findings indicate first that efforts to ensure a place for children and youth with handicaps in our communities through a right to a free, appropriate public education and to some extent through various family support programs have had demonstrably positive effects on out-of-home placements of children and youth. At the same time the aging of the population in residential settings poses new challenges in assuring a system that provides age appropriate experiences for the people in that system. Nowhere is the challenge greater than for the growing number of people at or nearing senior citizen status. The proportion of mental retardation family residents 65 years and older which has been growing steadily in recent years is likely to continue growing. In addition to increased longevity, major factors likely to contribute to sustaining this growth include the 8% of the residential population in 1987 between 55 and 64 years old, and federal policy that discourages placements of persons with mental retardation and related conditions into nursing homes, which in 1985 housed almost as many elderly people with mental retardation and related conditions (about 13,000) as did mental retardation facilities.
Epilepsy, cerebral palsy and circulatory disorders were the most common secondary conditions of persons in mental retardation facilities.
Epilepsy was reported for 30% of the mental retardation facility residents. It was highly related to the reported level of retardation (15% of persons with mild mental retardation, 45% for persons with profound mental retardation), and, therefore, to facility type. For example, 40% of large public facility residents and 20% of small facility residents had epilepsy, cerebral palsy was reported for 12% of residents of mental retardation facilities, and was also associated with level of mental retardation (6% of persons with mild or moderate mental retardation, 20% of persons with profound mental retardation). Circulatory conditions were reported for 11% of mental retardation facility residents. These were most highly associated with age, being 4 times as prevalent among people 55 years or older than among younger residents. Controlling for age circulatory conditions were not associated with level of mental retardation. Clearly factors associated high probabilities of placement in institutional settings (e.g., the severest cognitive impairments and the oldest ages) are also associated with secondary conditions that must often be attended to in special ways. Increasing community living opportunities for persons currently institutionalized will also require attention to the secondary physical and health conditions they frequently experience.
Institution residents were most likely to have functional limitations, but similarities across facility populations were as notable as the differences.
A majority of residents of both small and large facilities, including large public facilities were reported to be able to use the toilet, get in and out of bed, feed themselves and walk across the room without difficulty or assistance. Independent toilet use was reported for 86% of small facility residents and 60% of all large facility residents, including 52% of large public facility residents. The ability to feed oneself without the assistance of another persons was reported for 91% of small facility residents and 72% of large facility residents, including 65% of large public facility residents. The ability to walk across a room without the assistance of another person (using equipment if necessary) was reported 92% of small facility residents and 73% of large facility residents, including 67% of large public facility residents. While the proportion of small facility residents reported to require personal supervision or assistance with bathing or dressing (43% and 37%, respectively) was considerably smaller than the proportion of large facility residents reported to require assistance (68% and 62%, respectively), the statistics may be most notable for the reported overlap of 75% in small and large facility populations in these gross measures of functional abilities. In other words, while for academic purposes institution and community facility populations may be judged statistically different in functional, self-care areas, for policy purposes the similarities between these populations are probably at least as significant as the differences.
Large facility residents were considerably less likely than small facility residents to be involved "at all" in instrumental activities of daily living.
Most instrumental activities of daily living are difficult for most persons with mental retardation and related conditions to perform. In four key instrumental activities (telephone use, money management, purchasing personal items and community travel by personal or public transportation) NMES confirmed this difficulty by showing less than 30% of sample to be able to perform even one of the four activities independently. While small facilities tended to have more residents who were judged independent in the instrumental activities surveyed, a more notable difference was in the proportion of residents who were not engaged at all in these activities, even with help. For example, in shopping for personal items, 24% of small facility residents were not involved at all either independently or with help as compared with 55% of large facility residents, including 69% of large public facility residents. In getting around the community with personal or public transportation, 18% of small facility residents were not involved at all as compared with 46% of large facility residents, including 56% of large public facility residents. Small community facility residents were more often able to perform instrumental activities of daily living independently than were large facility residents. But when they were not, small community facilities were more likely than large facilities to involve residents in the activity by providing assistance and support.
Prosthetic equipment used varied considerably by type of facility.
There was wide variability in the use of various types of prosthetic equipment in facilities of different types. For example, corrective lenses were worn by 45% of small facility residents but only 25% of large facility residents, including 16% of large public facility residents. Hearing aids were worn by 6.5% of small facility residents and 2.5% of large facility residents. In contrast, wheelchairs were used by 23% of large facility residents and only 5% of small facility. Special dishes, cups and/or utensils were used by 18% of large facility residents and 6% of small facility residents. Urinary catheters and colostomy bags were used by only an estimated 1% of residents with no statistically significant difference by facility size or type. While it cannot be determined from the data provided whether the use of prosthetic equipment is appropriate, the magnitude of variation among different types of facilities is notable and could be in part associated with organizational factors as well as personal need. Assessment of the appropriateness of the use of various prosthetic devices particularly those affecting sensory acuity, mobility, and other important aspects of independent functioning, could make an important contribution to understanding the practical significance, if any, of the differences noted among facilities in the National Medical Expenditure Survey.
Most people in mental facilities did not have jobs for which they were paid, although there were major differences by the place in which people lived.
Only 39% of residents of mental retardation facilities were reported to have jobs for which they were paid. There was considerable variation by facility type, with 60% of small facility residents reported to have a paid job as compared with 30% of large facility residents, including 25% of large public facility residents. Over three-quarters of residents with jobs worked in sheltered workshops. Only 7% of residents had jobs in which they worked with nonhandicapped people. Supported or competitive employment away from the residential facility was reported for only 6% of small facility residents and 4% of large facility residents. Clearly in 1987 people with mental retardation and related conditions in residential settings were benefiting relatively infrequently from the growing efforts to encourage paid, productive activities for people with disabilities, particularly Integrated supported or competitive work. Efforts to improve opportunities for integrated, paid work for these populations seem needed, as do efforts to monitor their effects.
There are more direct care full-time equivalent positions in mental retardation facilities than residents, more than 250,000 in all.
Nationwide, there were an estimated 106 full-time equivalent direct care providers for every 100 residents of mental retardation facilities. Ratios of direct care staff members to residents were highest in large public facilities (1.51 to 1). Ratios in large facilities (1.18:1) were greater than in small facilities (0.72:1). Ratios of staff to residents were much lower in private for profit facilities (0.61:1) than in private nonprofit facilities, but much of this difference may come in foster family care homes where a single care provider provides care around the clock rather than in a time limited workday. With over 250,000 full-time equivalent direct care staff positions in residential services in the United States and estimated payroll expenditures of 5 billion dollars for staff filling those positions, clearly residential care is a major industry whose direct care work force is substantial in size and cost, and absolutely critical to its productive intent. Yet research shows clearly that major personnel problems abound. Staff turnover ranges on average from 25% to 33% in institutional settings, to 50% to 75% in community settings, higher than virtually any industry on which statistics are maintained. Low wages and benefits, nontraditional work schedules and job stress all contribute. Recruitment is becoming more difficult as the available pool of persons traditionally accepting these jobs (young adults, women) shrinks and is also recruited by a generally increasing service sector. Training becomes increasingly important as community services continue to decentralize services away from professionally dominated and supervised services. Clearly personnel initiatives are needed to guarantee basic stability and effectiveness in this industry as it continues to evolve toward community-based service delivery.
Total ICF-MR participation remains highly concentrated in large facilities and increasing proportions of large facility capacity is ICF-MR certified.
Medicaid participation in funding residential services for persons with mental retardation was highly concentrated in the large facilities. About 84% of all Medicaid certified capacity (ICF-MR, SNF, ICF) and 84% of ICF-MR certified capacity alone was in large facilities. Generally the smaller the facility the lower the likelihood that it would be certified for Medicaid participation. In 1987 facilities of 800 or more residents had 100% of their capacity certified; those with 300-799 residents were 96.6% certified; those with 76-299 residents were 66.9% certified; those with 16-75 residents were 31.3% certified; and facilities with 15 or fewer residents were 19.8% certified. Medicaid participation is in turn associated with higher levels of funding, higher ratios of staff to residents and specific standards for program content and review. Regarding funding, for example, nearly half (45.4%) of ICF-MR residents but only 11.7% of non-ICF-MR residents were in facilities with average daily costs of $106 or more in 1987. In the area of direct care staff to resident ratios, ICF-MR ratios were twice as large as those of noncertified facilities (1.33:1 vs. 0.66:1). Clearly if this society's commitment to including people with disabilities in its communities is to be fulfilled, larger and more comprehensive programs are needed to provide federal participation in community residential services delivery.
Occupancy of facilities was generally high and was related to both size and ICF-MR certification.
Occupancy of mental retardation facilities was estimated to be 90.2% of the maintained capacity of facilities. Small facilities reported a 94.1% occupancy. Large facilities reported 89.8% occupancy. ICF-MR certified facilities had an occupancy of 92.0%. Noncertified facilities were 87.5% occupied. Small ICFs-MR reported only an 89.0% occupancy, while small noncertified facilities reported that they were 96.5% occupied. Large ICFs-MR were 92.5% occupied, while large noncertified facilities were only 79.8% occupied. Facilities with the lowest occupancy rates were large private, noncertified facilities (78.7% occupied), and the very largest facilities. Facilities with 800 or more residents had by far the lowest rate of occupancy (66.2%). The occupancy of large mental retardation facilities with ICF-MR certification was not only considerably higher than noncertified facilities, it was much more likely to be made up of persons with mental retardation and related conditions (96% of residents of large ICFs-MR and 75% of residents of other large facilities). While considerable attention has been given to the problems in the quality of programs in ICF-MR institutions in recent years, the quality of care in large noncertified facilities should to be of equal or greater concern. With low occupancy, low staff to resident ratios (0.7:1 vs. 1.41 in large ICFs-MR), low per them payments (19% at $81 a day or more vs. 70.5% of large ICFs-MR) and low federal involvement in program requirements and program monitoring, there seems reason to suspect that increased attention to the quality of these facilities is warranted.