Intermediate Care Facilities for the Mentally Retarded ......In 1999, 111,532 people with mental retardation and other developmental disabilities were receiving support and care in

Intermediate Care Facilities for the Mentally Retarded:

Facility and Client Characteristics, 1999

Sarita L. Karon, Ph.D. and Patricia Beutel, B.A.

Center for Health Systems Research and Analysis University of Wisconsin – Madison

April 2001

Acknowledgements This report is based solely on data from the On-line Survey, Certification and Reporting (OSCAR) System provided by the Health Care Financing Administration (HCFA). The authors thank Betty Couchoud and Peggy Parks of HCFA for assistance in thinking about the data. Appreciation also is due to Kristen Voskuil for help with data synthesis, Allan Stegemann and Donna Kopp for review of materials, and Jenny Psota for preparation of the graphics. Preparation of this report was supported under HCFA contract number 500-96-010/0005, through a subcontract to the University of Wisconsin from Research Triangle Institute, Dr. Shulamit Bernard, Project Director. Statements made here are the sole responsibility of the authors. They do not necessarily reflect an official position of HCFA, Research Triangle Institute, or the University of Wisconsin.

Table of Contents

Chapter Page

1 Executive Summary ......................................................................................... i 2 Background and Introduction...........................................................................1 2.1 Background .....................................................................................1 2.2 Purpose .....................................................................................2 3 Data and Methods ............................................................................................4 3.1 Data Source............................................................................................4 3.2 Variables ................................................................................................5 3.3 Methods................................................................................................11 3.4 Data Cleaning ...................................................................................11 4 Findings..........................................................................................................13 4.1 National Overview...............................................................................13 4.2 Characteristics by State........................................................................20 4.3 Characteristics by Facility Size............................................................51 4.4 Characteristics by Ownership ..............................................................52 5 Discussion and Conclusions...........................................................................63 5.1 Discussion ...................................................................................63 5.2 Data Limitations and Biases ................................................................66

5.3 Recommendations for Changes to the OSCAR Data Base..................67 5.4 Conclusions ...................................................................................68

References...........................................................................................................70 Appendix A: State Profiles: ICF/MR Facilities and Clients, 1999

Appendix B: HCFA Form 3070G Appendix C: Selection of Highlighted Deficiencies

List of Tables and Figures

Tables Page

1 National Overview of ICF/MR Facility Characteristics: Size, Ownership and Staffing.........................................................................14

2 National Overview of ICF/MR Facility Characteristics:

Total and Specific Deficiencies .....................................................................15 3 National Overview of Client Characteristics .................................................17 4 National Distribution of Facility Characteristics: Size and Staffing..............19 5 National Distribution of Client Characteristics Across Facilities ..................21 6 Facility Characteristics by State: Size and Ownership ..................................23 7 Distribution of Facilities Across Bed Size by State .......................................25 8 Facility Characteristics by State: Staffing......................................................27 9 Facility Characteristics by State: Deficiency Data.........................................30 10 Percentage of Facilities with Select Deficiencies Cited by State...................32 11 Percents of Facilities and Clients Served and Rank Order by State ..............36 12 Client Characteristics by State .......................................................................39 A Number of Facilities, Clients and Distribution of Client Age ........................................................39 B Gender and Level of Retardation.....................................................41 C Other Developmental Disabilities....................................................43 D Physical and Sensory Disabilities....................................................45 E Behavior Management Approaches and Other Characteristics.................................................................47 13 Facility Characteristics by Bed Size: Ownership, Size and Staffing .............53 14 Facility Characteristics by Bed Size: Deficiencies ........................................54

15 Client Characteristics by Bed Size.................................................................55

16 Facility Characteristics by Type of Ownership: Size and Staffing ................57 17 Facility Characteristics by Ownership: Deficiencies .....................................59 18 Client Characteristics by Type of Ownership ................................................61

Figures 1 Most Frequently Cited Deficiencies ..............................................................34

2 Percent of Total U.S. Facilities and Total U.S. Clients Located in Each State.....................................................................................38 3 Comparison Between Percent of Facilities and Percent of Clients by Ownership.....................................................................................58

Chapter 1

Executive Summary Introduction In 1999, 111,532 people with mental retardation and other developmental disabilities were receiving support and care in 6591 residential settings known as intermediate care facilities for the mentally retarded, or ICFs/MR. These facilities are regulated by the Health Care Financing Administration (HCFA) and certified by the states in which they operate. ICFs/MR were originally developed as an alternative to the nursing homes and other public institutions in which people with developmental disabilities typically were served. The goal was to improve the quality of care provided to people with developmental disabilities. ICFs/MR were intended to provide care and habilitation, with emphasis given to skill development and the eventual relocation to community living. In recent years, some have questioned the role of ICFs/MR. Philosophical shifts among many in the developmental disabilities field now emphasize self-determination, consumer empowerment, and community-based residence. Changes in federal policies have led to a burgeoning number of alternatives to ICFs/MR. In particular, Section 2176 of the Omnibus Budget Reconciliation Act of 1981 (PL 97-35) gave states the ability to provide a broad range of home and community- based services (HCBS) to people with developmental disabilities (and some other disabling conditions), through a waiver process. Consequently, more people with developmental disabilities now live in community settings and receive HCBS services than are living in ICFs/MR. From a federal perspective, however, ICFs/MR continue to be a dominant force. Federal regulations specifically address care in ICFs/MR and strictly regulate providers. Additionally, both state and federal expenditures for ICFs/MR far exceed those for the HCBS program. In 1998, total expenditures for ICFs/MR services were 37% greater than the total spent on HCBS programs, even though HCBS programs were serving nearly twice as many people (Lakin et al., 1999). This report provides information about the nature of ICFs/MR and the clients they served in 1999. Information about the facilities describes ownership, size, staffing, and regulatory deficiencies. Client information includes demographic characteristics, types of disabilities, other functional issues, types of specialized treatments received, and relationships to the courts. Data Data were extracted from HCFA’s On-line Survey, Certification and Reporting (OSCAR) system. The OSCAR database contains information collected at the time of state and federal surveys of health care facilities, including ICFs/MR. These facilities are surveyed annually for certification purposes, and may be surveyed other times as necessary for on-

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going quality assurance. Data include information about ownership, capacity, staffing, client characteristics, and survey findings. While most data are drawn from surveys done in calendar year 1999, the data also include small numbers of facilities with information from the last quarter of 1998 and first quarter of 2000. This was done in order to ensure that we had the most complete and current information possible. Findings Facility Characteristics There were 6591 facilities operating in 19991. Facilities ranged from quite small (four beds, the minimum allowed) to over 1000. The average facility had 19 beds, and the median had only six beds. Across the nation, only 88% of all ICF/MR beds were occupied. However, the median facility was fully occupied. Low occupancy rates in many cases occurred in states that were attempting to reduce the number of ICFs/MR beds and increase the number of people served in community-based facilities. Staffing data showed an average of one direct care staff person (full-time equivalent, or FTE) for every 0.9 clients. This ranged from one direct care FTE for every 0.2 clients to one FTE for each 17.3 clients. Information about deficiencies cited during surveys offers some insight into the quality of care provided by facilities. Nationwide, the average facility had 2.7 deficiencies cited. A small number (3.9%) of facilities received citations for conditions of participation. Such citations indicate failure to meet fundamental requirements, as determined by review of individual outcomes and specific system requirements. Failure to meet these requirements triggers decertification, subject to appeal and review. Eighty-four percent (84%) of facilities were privately owned, with the majority of those (57%) owned by non-profit agencies. Of the 1040 publicly owned facilities, approximately half (517) were state-owned, and the remainders were owned by other public entities (e.g., cities, towns, counties, parishes). State owned facilities were larger than other types of facilities, with a median of 24 beds compared to a median of six for all other facility types (other public, and all private). Nearly two-thirds (62%) of people served by state facilities had profound retardation, compared with less than 40% of clients in other ownership types. An average of 3.3 deficiencies were cited for state owned facilities. This was slightly higher than the average number of deficiencies cited for other publicly owned facilities (2.9), private for-profit facilities (3.0), and private not-for-profit facilities (2.4). State facilities were more likely to have conditions of participations cited (i.e., deficiencies that are related to fundamental requirements and which trigger decertification activities) 1 Definitions of “facilities” and other terms are given in Section 3.2 of this report.

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cited than were other facilities (7.2% for state-owned facilities, versus 3.4% - 4.4% for other ownership types). State owned facilities were less likely than privately owned facilities to have deficiencies cited that were related to health and nutritional care, but were more likely to be cited for deficiencies related to client rights and freedom from abuse. Because state facilities are larger than other types, similar patterns were observed by facility size. Client Characteristics There were 111,532 clients residing in ICFs/MR in 1999. Most were male (58%) and between the ages of 22 and 65 (85%). The median facility did not serve any clients who were younger than 22 or older than 65. All client characteristics showed tremendous variation across facilities. With the exception of the proportion of clients with any level of retardation, the proportion of clients with specific characteristics ranged across the entire possible spectrum, from 0% to 100% across facilities. Nearly all ICF/MR clients (98.7%) had some level of mental retardation. Other developmental disabilities also were prevalent, with 20% of clients having cerebral palsy, 6% having autism, and 40% having epilepsy. Many clients had physical or sensory impairments. Over half could not walk without assistance, 54% had some speech or language impairment, 16% had partial or total hearing loss, and almost 40% had partial or total loss of sight. Data indicated the extent to which clients had specific care planning needs. More than one-fifth had medical care plans, indicating a need for 24-hour nursing care. Other data showed the extent to which specific approaches to behavior management were used. Over one-third (36%) of clients were receiving drugs to manage behaviors. Others were physically restrained (9%), placed in time-out rooms (1%), or receiving painful or noxious stimuli (0.1%). Clients living in small facilities (16 beds or fewer) were more likely than those in larger facilities to be non-ambulatory but mobile (43% vs. 31%), to have partial vision loss (35% vs. 28%), or to receive drugs (39% vs. 34%) or painful/noxious stimuli (0.2% vs. 0.01%) to control behaviors. Compared to people living in larger facilities, people in facilities with 16 beds or fewer were less likely to have cerebral palsy (17% vs. 22%) or epilepsy (32% vs. 45%), to have total vision loss (6% vs. 9%), or to be both non-ambulatory and non-mobile (10% vs. 21%) than were clients in larger facilities. Clients in state owned facilities were more likely to be male, to have higher levels of retardation, or to have epilepsy than were clients in other types of facilities. Clients in state owned facilities also were more likely to have other physical and sensory disabilities, and for those disabilities to be more severe than were clients in other types of facilities. Clients in state owned facilities were more likely to have been admitted under court order, and slightly more likely to have a court-appointed guardian.

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Changes Over Time A study of OSCAR data from 1992 (Larson and Lakin, 1995) provided an opportunity to identify changes over time. Noteworthy changes over the seven-year period included the following.

There was tremendous variation among states in the numbers of facilities operated and clients served, with much volatility over time. Michigan, which was the fifth largest state with 438 ICFs/MR in 1992, was one of the smallest states in 1999 with only two ICFs/MR operating.

The number of clients served in ICFs/MR decreased from 141,083 to 111,532.

The average facility size appeared to have decreased. Our study found that the average facility served 16.9 clients, down considerably from the 1992 average of 22.5 clients per facility. However, this difference may be confounded by differences in the method for defining “facility” used by the two studies.

There was an increase in direct care employees per client, from 1.00 FTE per client in 1992 to 1.12 in 1999.

There were some changes in the prevalence of client characteristics in ICFs/MR. The proportion of clients age 46 and older increased over this period, as did the proportions of clients with mild or moderate retardation. The proportions of clients with other developmental disabilities (epilepsy, cerebral palsy, autism) increased slightly, with the greatest increase occurring in the proportion of clients with autism (from 4.8% to 6.2%).

The use of medications to manage behaviors increased, while the use of physical restraints decreased very slightly. The use of time-out rooms decreased, but even in 1992 affected fewer than 2% of all clients.

Comparisons across time in trends by bed size show that the percentage of clients served by larger facilities (more than 16 beds) decreased from 72% of all clients in 1992 to 61% of all clients in 1999. The total number of clients being served in smaller facilities has increased only slightly (by 8% from 1992 to 1999), so that this change primarily reflects the movement of people out of larger facilities.

Clients living in small (16 bed or less) facilities experienced a 35% increase in the likelihood of being physically restrained between 1992 and 1999, while clients in larger facilities experienced a 19% decrease in the likelihood of physical restraint. Facility size was unrelated to other changes in client characteristics.

The likelihood of being physically restrained also varied over time by ownership. There was a slight increase in the use of physical restraints among privately owned facilities, and a decrease in publicly owned facilities. This is consistent with the trends by bed size.

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Conclusions Lessons Learned

In 1999, ICFs/MR could best be described as varied. There was no “average” ICF/MR. Facilities differed in the number of clients they served and the needs of those clients. Although state facilities tended to be larger and serve more severely disabled individuals than did other types of facilities, this was not true in all cases.

Many differences were observed across states. Some states have made concerted efforts to close their ICFs/MR, with Alaska succeeding, and Michigan reducing the number from over 400 to only two. The number of ICFs/MR operated by any state varied tremendously, from one to over 1000. Such differences clearly reflect state policies and philosophies. A study of ICFs/MR in the context of state policies regarding waiver services and processes for determining eligibility for various services would be extremely useful at this time. Particular attention should be given to any effect of ICF/MR closings on clients’ access to needed services and supports. Evidence suggests that, in some states, small ICFs/MR have been converted to waiver homes without a change in the facility structure or clients served; the only change is in the regulatory authority (Lakin et al., 2000). Study of the impact of such changes on clients’ lives and public expenditures would be useful.

The ability to identify facilities serving particular client types, in combination with deficiency data, can provide an opportunity to identify “best practice” facilities that could be studied to learn about approaches to quality improvement.

Finally, we note that this study presented information on ICFs/MR only. Given the trend to waiver services, coupled with the trend toward smaller facilities, study of the entire service system is needed. Questions to be addressed by such studies would include the identification and specification of differences between small ICFs/MR and waiver homes; differences in the types of client needs served in the different settings; differences in staffing levels and staff training; processes for accessing one setting or the other; and differences in the quality of care and quality of life provided by each setting.

Recommendations for OSCAR Data The information presented here provides a detailed view of ICFs/MR operating at a point in time. While the OSCAR data are extremely useful for this purpose, their value could be improved further with a few changes.

Data currently are not audited for accuracy. While we had no reason to question most data, there were situations in which data clearly were wrong. This is particularly true for staffing data. A simple set of edit checks could be automated and would be extremely useful in this area.

Clarification of instructions on form completion would be helpful. Two areas in particular need of clarification are the classification of people who are age 65, and

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the method for classifying licensed nursing time. In the former case, people who are age 65 may be classified in either of two age categories. While we did not find any cases of facilities double-counting individuals, this does create inconsistency across facilities. In the case of the latter variable, licensed nurses may be reported as either direct care staff or nursing staff, depending on the tasks they perform. These instructions are likely to be difficult for facilities to follow. We identified some cases in which it appeared that nurses’ time was reported as one or the other, but not both, where both clearly would have been reasonable. We also identified cases in which it appeared that nurses’ time was counted both under RN/LPN time and in direct care staff time, although it was not double-counted in the total staff time.

Data on the frequency with which particular behavioral control techniques are used confound two issues: the number of clients who have need of behavior management, and the approaches chosen by the facility. The addition of variables to indicate the number of clients with behavioral management concerns would help to make these data more meaningful.

Information about staffing is reported as total FTEs by type of staff. Further breakdown by full-time, part-time, and contract staff would be helpful. These breakdowns are reported in OSCAR for nursing facilities, and could be similarly collected for ICFs/MR.

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Chapter 2

Background and Introduction 2.1 Background In 1999, 111,532 people with mental retardation and other developmental disabilities were receiving support and care in 6591 residential settings known as intermediate care facilities for the mentally retarded, or ICFs/MR. These facilities are regulated by the Health Care Financing Administration and certified by the states in which they operate. Recent changes in philosophies of care have led to many individuals being served in community-based settings under Medicaid waivers. However, a sizeable number of people remain in ICFs/MR. This report describes these facilities and characteristics of the clients they serve. As societal perceptions and responses toward persons with developmental disabilities continually evolve, the system of services to meet their needs responds accordingly. Prior to the 1960s, large, state-operated institutions offered the primary service option for persons with developmental disabilities. Expectations for care in institutional settings were primarily focused on custodial and medical concerns. Frequently placed in rural regions, institutions did not accord many community integrative opportunities (Braddock, 1998). From the 1950s through the 1970s, disability advocates brought attention to the socially restrictive conditions of many institutions. Human service professionals determined institutional programming for people with developmental disabilities was inadequate, leading to a period of widespread deinstitutionalization (Lakin, Bruinicks, and Larson, 1992). Institutional placements substantially reduced and community service options expanded (Bradley and Knoll, 1990). One of the emerging service options was the Intermediate Care Facility for Persons with Mental Retardations (ICFs/MR). The ICF/MR benefit was intended by Congress to create a fiscal incentive to increase the “quality of environment, care and habilitation in public institutions and to respond to evidence of widespread neglect of persons with developmental disabilities in State institutions, many of which provided little more than custodial care” (GAO, 1996). Bradley and Knoll (1990) described ICFs/MR as

[t]he alternative to institutions. . . . The basic orientation in these programs was on removing the person to a specialized treatment environment where problems could be worked on and skills could be developed. The underlying assumption was that once people had achieved a higher level of functioning, they could move on to a less restrictive setting, typically to a group home or other community facility. (page 4)

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During this same time, community residential and day programs were created, the professional in developmental disabilities emerged, and focus shifted to individualized programming. People with developmental disabilities moved from receiving custodial care in nursing homes to the specialized treatment environment of the ICF/MR with its focus on skills development. By the 1980s, though, considerable questioning began as to whether the “slavish focus on professional services and specialized programs had resulted in changes reflective of the original vision of normalization. . .” (Bradley and Knoll, 1990, p. 6). Instead of concentrating on how to make the individual adapt to the environment, attention was placed on ways of adapting the environment and supports to the individuals. Philosophical and programmatic approaches shifted from simply placing services in the community (i.e., the deinstitutionalization period) to developing integrative and inclusive services. The normalization (Wolfensberger, 1977) and consumer empowerment movements (Olney and Salomone, 1992) contributed to an approach of not just integration, but inclusion. Changes in federal policies have led to a burgeoning number of alternatives to ICFs/MR. In particular, Section 2176 of the Omnibus Budget Reconciliation Act of 1981 (P.L. 97-35) gave states the ability to provide a broad range of home and community- based services (HCBS) to people with developmental disabilities (and some other disabling conditions), through a waiver process. Contemporary approaches to service provision include supported employment, supportive living initiatives, parent support services, family support programs, educational inclusion, person-centered service coordination, and sexuality education. These services may be coordinated and delivered through ICFs/MR or through other means as are provided through Medicaid HCBS programs. As a result, more people with developmental disabilities now live in community settings and receive HCBS services than are living in ICFs/MR (Prouty and Lakin, 1999). From a federal perspective, however, ICFs/MR continue to be a dominant force. Regulations specifically address care in ICFs/MR and strictly regulate providers. Additionally, both state and federal expenditures for ICFs/MR far exceed those for the HCBS program. In 1998, total expenditures for ICFs/MR services were 37% greater than the total spent on HCBS programs, even though HCBS programs were serving nearly twice as many people (Lakin et al., 1999). The high costs of care for people residing in ICFs/MR reflects the extensive use of professional and paraprofessional services for personal care and supports, the inclusion of room and board, and the use of multiple programs such as case management, and day time habilitation programs outside of the ICF/MR (Lakin et al., 1999). Given the combination of high costs and regulatory responsibility, it is clear that ICFs/MR will continue to be an important federal concern for years to come. 2.2 Purpose In this report we describe the supply of ICFs/MR in 1999, characteristics of the clients served, and an overview of the quality of services given. The data represent a point in

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time. They may be compared with similar data reported for previous time periods to observe past changes, and provide a baseline from which one can monitor changes in the future. Comparisons made with the situation in the past can help to identify impacts of past policy changes; as baseline data, they are useful to track impacts of policies implemented today. It is useful to update this type of profile periodically, as the nature of services for people with developmental disabilities is changing. There have been numerous closings of ICFs/MR, including the closing of all such facilities in Alaska. As the number of ICFs/MR closes, it is important to be able to track the type of resources that remain available to individual clients. We begin this report by describing the data source used and our methods of analysis. We then present information about ICFs/MR (size, ownership, staffing, deficiencies) and characteristics of the people who live in them. We present data in a variety of ways, including for the nation as a whole, by state, by ownership, and by facility size. We conclude with a discussion of our findings, including key changes since 1992 and implications for future research.

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Chapter 3

Data and Methods

In this chapter, we describe the data used for these analyses. We discuss the data source, specific variables extracted from that source, and data cleaning and calculations that were used to create the analytic variables. We describe our approach to data analysis. Finally, we discuss limitations of these data.

3.1 Data Source Data were extracted from the On-line Survey, Certification and Reporting (OSCAR) system maintained by HCFA. The OSCAR system contains information collected at the time of state or federal surveys of health care facilities. Federal regulation requires that ICFs/MR be recertified each year. A successful survey is a required part of that certification process. At the time of the survey, HCFA form 3070G (Appendix B) is completed by the surveyors, with assistance from the facility staff. This form provides information about the facility characteristics, including ownership, capacity, and staffing. It also describes the number of clients with specific characteristics. HCFA form 3070H is used to report on the findings of the survey, including any deficiencies cited. A deficiency citation indicates failure to comply with a specific regulation and as such provides one measure of quality. Information from both the 3070G and 3070H are entered into the OSCAR database at HCFA. We selected data to provide a snapshot of ICFs/MR in calendar year 1999. In order to obtain information on the maximum number of facilities, we expanded the period to include data from surveys conducted anytime between October 1, 1998 and March 31, 2000. Although each facility should be surveyed once every twelve months, the addition of a three-month window on each side of the year maximized the number of facilities for which data were available. We also included facilities with surveys conducted in April 2000. While this expanded the time frame beyond what could be considered a “1999 survey,” it enabled us to report on the most current information available as of the date that we extracted the data from OSCAR. The data were reviewed to ensure that we identified only one record for each facility. Where multiple records existed, we chose the most recent one. There were 6783 ICFs/MR with any information contained in OSCAR. Of those, 6591 (97.2%) had data within our time frame. The remaining 192 facilities reported no information after October 1, 1998. The most recent data for 123 of those was before January 1, 1998. Upon investigation, those facilities were found to have either closed or converted to waiver homes, which do not require certification. Of the 6591 ICFs/MR in our sample time frame, 5369 (81.5%) were surveyed in 1999; 123 (1.9%) in the last three months of 1998; and 1099 (16.7%) in early 2000. We included in the facilities with surveys in 2000 a total of 48 ICFs/MR with survey information in April 2000.

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The resultant analytic database included ICFs/MR from all states except Alaska. The last ICF/MR in Alaska was closed in 1998. 3.2 Variables We selected variables from OSCAR to address facility characteristics (size, ownership, staffing, and quality) and client characteristics (demographics, disabilities, special care requirements). Some variables were used in the analysis as they exist in OSCAR, while other analytic variables required calculation based on data in OSCAR. Our definitions for each variable are presented below. Facility Characteristics Facilities. A facility was defined on the basis of having a Medicaid Provider Number. Separate wings, divisions, or cottages that were part of a common organization were treated as independent facilities, if they had distinct Provider Numbers. Thus, the number of facilities is defined as the number of unique Provider Numbers. Beds. This variable is the total number of ICF/MR beds certified under the Provider Number. We note that this number may be less than the total number of beds for the facility, if not all of those beds are certified as part of the ICF/MR. Clients. This is the total number of ICF/MR clients. This number represents individuals living in the ICF/MR. Individuals receiving services through programs operated by the ICF/MR, but who were residing elsewhere, were not included in this number. Occupancy Rate. Occupancy rate was calculated as the number of clients divided by the number of beds. Ownership. Facility ownership is indicated by a single variable. Codes indicate ownership as private, non-profit (1); private, for-profit (2); and state owned (3). Codes indicating ownership by city/town (4), county (5), city/county (6) and other (7) were combined into a single category of “other governmental ownership.” Staffing. Staffing levels were described using several variables, to address different types of staff and different metrics.

• Employees. The total number of full-time equivalent (FTE) employees working in ICFs/MR in the state. Such personnel include direct care staff, licensed nursing personnel, and other professional and support staff. FTEs are reported to the nearest quarter. We note that the total number of individuals working in such facilities is likely much greater, as some people are employed on a part-time basis.

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• Direct Care Employees. The total number of FTEs who are employed in direct care positions in ICFs/MR. Direct care staff are defined as those people “whose responsibility it is to manage, supervise and provide direct care to individuals in their residential living units.” They may include “professional staff (e.g., registered nurses, social workers) or other support staff, if their primary assigned daily shift function is to provide management, supervision and direct care of individual’s daily needs (e.g., bathing, dressing, feeding, toileting, recreation and reinforcement of active treatment objectives) in their living units. However, professional staff who simply work with individuals in a living unit on a periodic basis cannot be included. Also, supervisors of direct care staff can be counted only if they share in the actual work of the direct care of individuals” (42CFR483.430(d)(2)).

• Clients per direct care employee. The total number of clients divided by the total

number of direct care FTEs. All facilities must provide adequate direct care staff to meet the needs of clients, as specified in their active treatment plans.

• RNs per Client. This is calculated as the number of registered nurse (RN) FTEs

divided by the number of clients.

• Number of LPNs per Client. This is calculated as the number of licensed vocational/practical nurse (LPN) staff in FTEs divided by the number of clients.

Deficiency data. Deficiency data are reported by surveyors using HCFA form 3070H, and entered into OSCAR from there. Deficiencies may address either health related concerns or life/safety codes. The former deficiencies are identified by careful review and observation of individual clients, while the latter are based on observation of the physical plant. We have limited our analysis to health related deficiencies. We extracted information on all such deficiencies from OSCAR, and used the data to identify the analytic variables described in this section.

• Health Deficiencies Cited. The number of health deficiencies cited is a count of all such deficiencies reported in OSCAR.

• Conditions of Participation Cited. The number of facilities with one or more

conditions of participation cited. ICF/MR certification is governed by eight conditions of participation, each with specific standards that encompass a broad range of areas necessary to deliver services to ICF/MR clients. Within these eight Conditions of Participation there are 55 “fundamental tags (deficiencies)” that are reviewed on each re-certification survey. Inadequacy in one or more of these fundamental tags may or may not lead to citation of a condition of participation, depending on the nature and severity of the concern. A deficiency in any of the eight conditions of participation is cause for decertification of the facility. The eight Conditions of Participation include Governing Body and Management, Client Protections, Facility Staffing, Active Treatment, Client Behaviors and Facility Practices, Health Care Services, Physical Environment, and Dietetic

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Services. While it is possible for a facility to have more than one Condition of Participation cited, we report only whether a facility had any Condition of Participation Cited. This reflects the belief that the essential concern is whether any one of these essential Conditions is unmet.

• No Deficiencies Cited. We report the number of facilities with no health

deficiencies cited. Specific Deficiencies We identified a set of ten specific deficiencies that are believed to address issues that are closely related to the types of quality of life and quality of service concerns that one would want to address through quality indicators. The ten deficiencies that we selected closely parallel a preliminary set of quality indicators, currently undergoing development (Karon and Bernard, 2000). The process by which we selected these ten deficiencies is described in Appendix C.

• Client Rights. Deficiency W125 addresses client rights. The regulation addressed by this deficiency requires that the facility “allow and encourage individual clients to exercise their rights as clients of the facility, and as citizens of the United States, including the right to file complaints and the right to due process” (42CFR483.420(a)(3)).

• Freedom from Abuse. Deficiency W127 addresses freedom from abuse. The

regulation states that facilities must “ensure that clients are not subjected to physical, verbal, sexual or psychological abuse or punishment” (42CFR483.420(a)(5)). This regulation addresses abuse regardless of the source (e.g., staff, other clients, self).

• Freedom from Restraint. Deficiency W128 addresses freedom from both

chemical and physical restraints. Under 42CFR483.420(a)(6), facilities must “ensure that clients are free from unnecessary drugs and physical restraints and are provided active treatment to reduce dependency on drugs and physical restraints.”

• Personal Privacy. Deficiency W129 addresses the requirement that facilities

“provide each client with the opportunity for personal privacy” (42CFR483.420(a)(7)).

• Freedom of Association. Deficiency W133 is cited when facilities fail to

“ensure clients the opportunity to communicate, associate and meet privately with individuals of their choice “ (42CFR483.420(a)(9)).

• Personal Skills Training. Deficiency W242 is used when clients do not

receive adequate support for personal skills development. The regulation requires facilities to develop individual program plans that include, “for those clients who lack them, training in personal skills essential for privacy and

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independence (including but not limited to toilet training, personal hygiene, dental hygiene, self-feeding, bathing, dressing, grooming, and communication of basic needs), until it has been demonstrated that the client is developmentally incapable of acquiring them” (42CFR483.440(c)(6)(iii)).

• Active Treatment Plan. Deficiency W249 is used when facilities fail to

implement individual program plans. The regulation states that, “As soon as the interdisciplinary team has formulated a client’s individual program plan, each client must receive a continuous active treatment program consisting of needed interventions and services in sufficient number and frequency to support the achievement of the objectives identified in the individual program plan” (42CFR483.440(d)(1)).

• Protection of Rights. Deficiency W285 is used when facilities fail to protect

the rights of clients who have behaviors that are difficult to manage. By regulation, “interventions to manage inappropriate client behavior must be employed with sufficient safeguards and supervision to ensure that the safety, welfare and civil and human rights of clients are adequately protected” (42CFR483.450(b)(2)).

• Health Care. Deficiency W322 is used when facilities do not provide

adequate health care for clients. Facilities must “provide or obtain preventive and general [health] care” (42CFR483.460(a)(3)).

• Nutrition. Deficiency W460 is cited when facilities do meet the nutritional

needs of clients. “Each client must receive a nourishing, well-balanced diet including modified and specially-prescribed diets” (42CRF483.480(a)(1)).

Client Characteristics Information about all client characteristics is report on the 3070G as the number of individuals with the specific characteristic. Depending on the specific analysis, we may report information either as number of clients, or as the percent of clients with the characteristic (number of clients with characteristic divided by total number of clients in the unit of analysis). Age. Age is determined based on the last day of the survey. Age categories include 0 - 22 years, 22-45 years, 46-65 years, and 65 years or older. (The issue of overlap between the last two age groups is discussed in Section 3.5.) Gender. The number of clients is reported separately by gender (male, female). Clients with retardation. The number of clients who have any level of mental retardation is reported, as is the number at each level of retardation. Levels of retardation are intended to reflect the definitions given in the 1983 edition of the

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American Association on Mental Deficiency’s Manual on Classification in Mental Retardation. Levels include mild, moderate, severe, and profound. Clients with autism. This reflects the number of clients with autism. Autism is defined as “a diagnosis whereby the individual exhibits extreme forms of self-injurious, repetitive, aggressive, or withdrawal behaviors; extremely inadequate social relationships; or extreme language disturbances” (State Operations Manual, Appendix J, Rev. 278, page J-18.5).

Clients with cerebral palsy. This is based on the number of clients with cerebral palsy. Cerebral palsy is described as a “condition whereby gross and fine movements and speech clarity of the individual may be impaired but performance of activities of daily living is functional; or, the individual is unable to perform adequately activities of daily living such as walking, using hands, or using speech for communication” (State Operations Manual, Appendix J, Rev. 278, page J-18.5).

Clients with epilepsy. This is the number of clients with epilepsy. Epilepsy is described as “a neurological disorder characterized by seizures of motor and sensory movement” (State Operations Manual, Appendix J, Rev. 278, page J-18.5). Clients with epilepsy are further disaggregated by whether or not their epilepsy is controlled by medication. Non-ambulatory clients. This reflects the number of clients who are unable to walk independently. These clients are broken down into those who are mobile, i.e., are able to move themselves from one place to another using a variety of devices (e.g., crutches, walkers, wheelchairs), and those who are non-mobile.

Speech/Language Impaired. This is the number of clients with impairment in oral communication.

Hearing Impaired (total). This is the number of clients who have any hearing impairment. Numbers also are reported separately for clients who are hard of hearing (i.e., able to hear speech with or without amplification) and those who are deaf.

Visually Impaired (total). This is the number of clients who have any visual impairment. Numbers also are reported separately for clients who are visually impaired (i.e., are able to see objections with correction) and those who are blind. The following four items identify some approaches that may be used to help manage client behaviors. By regulation, facilities must seek to use the least intrusive approaches possible. Other approaches “which are potentially stigmatizing to the individual or otherwise would represent a substantial departure from the behavior of comparable peers without disabilities” may be used when there is clear evidence that more positive and less intrusive techniques have been tried and found to be ineffective (42CFR483.450(b)(1)). Data are presented for four approaches to behavior management that may be considered potentially stigmatizing or highly

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intrusive. High rates of use of these approaches do not necessarily indicate poor behavior management techniques. Whether the use of such techniques is appropriate or not must be determined by review of each situation on its merits. Drugs to control behavior. This is the number of clients whose care plans call for the use of “medications prescribed and administered for purposes of modifying the maladaptive behavior of an individual” (42CFR483.450(b)(1)(iv)). Physically restrained. This is the number of clients who are physically restrained as part of a care plan. Physical restraints include “any manual method or physical or mechanical device that the individual cannot remove easily, and which restricts the free movement of, normal functioning of, or normal access to a portion or portions of an individual’s body . . .. Excluded are physical guidance and prompting techniques of brief duration and mechanic supports” (42CFR483.450(b)(1)(iv)), such as may be provided by splints, wedges, bolsters, lap trays, and adaptations to wheelchairs for purposes of providing support for proper body position or alignment (42CFR483.440(c)(6)(iv)). Time-out Rooms. This reflects the number of clients whose care plans call for use of time-out rooms. This is described as “the use of a room to implement a clinical procedure by which an individual is removed from positive reinforcement contingent upon the exhibition of a maladaptive behavior, until appropriate or adaptive behavior is exhibited” (42CFR483.450(b)(1)(iv)). Painful or noxious stimuli. The number indicates clients whose care plans call for the application of noxious or painful stimuli. Such application is defined as a “clinical procedure by which staff apply, contingent upon the exhibition of maladaptive behavior, startling, unpleasant, or painful stimuli, or stimuli that have a potentially noxious effect.” Regulations state that this approach is to be used as a last resort only. There must be evidence to show that other methods have failed and “that to withhold the procedure would cause irreparable harm to the health of the individual or others.” Care must be taken to ensure that the stimuli are used safely. “There must be continuous monitoring while the procedure is in effect. The procedure must not result in physical or mental harm to the health and safety of the individual” (42CFR483.450(b)(1)(iv)). Medical care plans. This indicates the number of clients who require 24-hour licensed nursing care, as determined by a physician (42 CFR 483.460(a)(2)). Court-ordered admissions. This documents the number of clients who are living in the ICF/MR as a result of a court-ordered admission. Policies and practices regarding court-ordered admissions vary by state. Clients admitted under a court order do not necessarily require an active treatment plan. Over age 18 with legal guardian. This reflects the number of clients who are over age 18 and who have a legally appointed guardian. Guardians may be appointed for

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clients who are not competent to make decisions on their own behalf. States vary in their guardianship practices. In some states, competent parents or other family members are assumed to have guardianship without requiring formal appointment by the courts. 3.3 Methods Data Aggregation As discussed above, client-level data is reported in OSCAR as numbers of individuals in the facility who have each characteristic. We converted numbers to percents, by dividing the number of individuals in each category by total number of clients. The percents were calculated for each level of aggregation (e.g., national, state, ownership). For example, the percent of clients who are male for the nation as a whole is calculated as the total number of male clients in the country divided by the total number of ICF/MR clients in the country. For any given state, the comparable number is calculated as the number of male clients in the state divided by the total number of clients in the state. This approach is equivalent to calculating weighted averages of the facility percents, where the weights are the number of clients in the facility.

Methods of Analysis Data were extracted from OSCAR and downloaded directly from the HCFA Data Center on May 11, 2000. Data for New Jersey were added in late July, 2000, as they were unavailable prior to that time. Data were reviewed for accuracy. Our approach to data cleaning is described in Section 3.4. We conducted a variety of descriptive analyses, presenting information about facility and client characteristics. Data are presented at varying levels of aggregation: for the nation, for each state, by ownership type, and by bed size. A summary profile, highlighting select characteristics for each state, is provided as Appendix A. 3.4 Data Cleaning

As described previously, data on facility and client characteristics are reported by the facility staff on form 3070G. Surveyors may identify and correct glaring errors, but the data are not audited or cleaned in any formal way. We reviewed the client characteristics and staffing data for reasonableness of values. The number of instances in which an extreme data value can confidently be declared “erroneous” is quite small. In no case did the number of clients with any characteristic exceed the total number of clients reported. By definition, all client characteristics fell within the range of 0 to 100 percent. Because the distributions of values for client characteristics were highly skewed, standard methods of data cleaning, such as identifying cases more than some number of standard deviations (typically, two or three) above the mean as highly likely to be erroneous, did not apply to this situation. Further, there was no reasonable basis for determining that extreme values were unreasonable, as there are facilities that specialize in unique populations.

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The issue of data cleaning for staffing data is more typical. There are staffing levels that one can clearly say appear to be unreasonable and are, in all probability, erroneous. When these outliers are excluded, the staffing levels are fairly normal in their distributions. For analyses of staffing levels, we excluded 34 facilities in which values were more than two standard deviations above the mean, 40 facilities with less than 1.0 FTE total staffing, and eight facilities in which other data errors were detected in direct care staffing levels. Facilities with questionable staffing data were excluded from all analyses of staffing information; however, they were included in analyses of other facility and client characteristics. Thus, analyses for staffing data represent 6509 facilities; all other analyses are based on 6591 ICFs/MR. We also identified questionable occupancy data. There were a number of cases in which occupancy rates exceeded the logical maximum of 100%. In most cases, this resulted from the facility reporting a small number (1-3) of clients greater than the number of beds. We believed that such situations were not impossible. For example, data such as these can result when facilities count all clients served within a recent time period, where some have been discharged and others admitted; this, in effect, double-counts the number of clients served by any one bed. In those few cases where the excess of clients over beds was much larger or where the discrepancy between beds and clients affected the bed size group used in the analyses, we followed up by telephone with the facility administrators to determine the nature of the error. In two cases, we made a change to the number of beds in the database. In three cases, the facilities were in the process of downsizing, and indicated that the low number of beds was correct. In five cases, the contacts indicated that the data were correct as reported. Other than the two cases in which we changed the number of beds, we did not change any of the raw data. Occupancy rates were capped at 100%.

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Chapter 4

Findings

In this chapter, we present the findings of our analyses. All analyses are presented in order of decreasing aggregation. We begin with information for the nation as a whole. We then present information by state, by bed size, and by ownership. Within each aggregation level, we present information first for facility characteristics, then for client characteristics.

4.1 National Overview Facility Characteristics Table 1 provides an overview of the types of ICFs/MR that existed in the country in 1999. During this period, there were a total of 6591 facilities for which we have data. Most (5551) facilities were privately owned. Most of those (3162) were not-for-profit, and the remainder (2389) were operated on a for-profit basis. A smaller number of facilities (1040) were publicly owned. About half (517) of the publicly owned facilities were owned and operated by states. The remainder were owned by other government entities, including cities, counties, and other government divisions. These facilities maintained 126,450 beds, or an average of 19.2 beds per facility. However, the majority of facilities were smaller than that, as shown by the median bed size of six. A total of 111,532 clients were served in these beds during this period. The average facility served 16.9 clients. In keeping with the median bed size, however, the median facility served only six people. Together, these figures illustrate the skewed distribution of facility sizes and clients served. There were a total of 178,064 full-time equivalent (FTE) employees working in ICFs/MR during this time. Of these, 120,092 FTEs worked in direct care positions. A critical staffing issue concerns the ratio of clients to direct care staff. Across the nation, there were 0.92 clients for each direct care staff FTE. The median facility had a ratio of 0.89. We note that the actual number of individuals working in ICFs/MR was likely greater than suggested by these numbers, both because the staffing data excluded facilities with questionable staffing data and because some share of people were employed on a part-time basis. The client to direct care staff ratio is affected by this, and also must be interpreted in light of staffing patterns throughout the day. It is likely that more staff were employed during daytime than nighttime hours. Thus, during the time that clients are awake and active, there may be more staff available to them.

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Table 1

National Overview of ICF/MR Facility Characteristics: Size, Ownership and Staffing

Facility Size

Facilities (#) 6,591

Beds (#) 126,450

Beds per Facility 19.2

Median Number of Beds per Facility (#) 6

Clients (#) 111,532

Clients per Facility (#) 16.9

Median Number of Clients per Facility (#) 6

Occupancy Rate (%) 88.2%

Ownership

Privately Owned Facilities (#) 5,551

For-profit Facilities (#) 2,389

Not-for-profit Facilities (#) 3,162

Publicly Owned Facilities (#) 1,040

State-Owned Facilities (#) 517

Other Publicly Owned Facilities (#) 523

Staffing*

Total Employees (FTEs) 178,064

Direct Care Staff (FTEs) 120,092

Total Employees per Facility (FTEs) 27.4

Client-to-Direct Care Staff Ratio (#) 0.92

Median Client-to-Direct Care Staff Ratio (#) 0.89

RNs per Client (FTEs) 0.06

LPNs per Client (FTEs) 0.08

* Staffing data are based on 6509 facilities, due to data cleaning Table 2 provides a national overview of ICF/MR quality, as represented by deficiency data. On average, there were 2.74 deficiencies cited per facility on their most recent surveys. There were 2346 facilities, or about 36% of all facilities, which had no

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deficiencies cited on their most recent survey. There were 258 facilities, or about 4% of facilities nationwide, for which the deficiencies cited included one or more that addressed “conditions of participation.” We identified ten deficiencies that are closely related to the type of quality of life and quality of care concerns one might address through a set of quality indicators. (This process is described in Appendix B.) Table 2 shows the number and percent of facilities in which they were cited. The most frequently cited of these was W249, which addresses the need for a continuous, active treatment plan that is designed and implemented so as to “support the achievement of the objectives identified in the individual program plan.” Other frequently cited deficiencies were those addressing the provision of health care (W322) and the provision of personal skills training (W242). Other deficiencies were cited less frequently. The deficiency addressing the right to free association (W133) was cited only six times, or in barely 0.1% of the facilities.

Table 2 National Overview of ICF/MR Facility Characteristics:

Total and Specific Health Deficiencies Number

of Facilities

Percent of Facilities

(%) Total Health Deficiencies Cited 18,065 na Health Deficiencies per Facility 2.7 na Facilities with Conditions of Participation Cited 258 3.9 Facilities with No Deficiencies Cited 2,346 35.6 Clients Rights Cited (W125) 98 1.5 Freedom from Abuse Cited (W127) 70 1.1 Freedom from Restraint Cited (W128) 92 1.4 Personal Privacy Cited (W129) 63 1.0 Freedom of Association Cited (W133) 6 0.1 Personal Skills Training Cited (W242) 383 5.8 Active Treatment Plan Cited (W249) 1,413 21.4 Protection of Rights Cited (W285) 83 1.3 Health Care Cited (W322) 474 7.2 Nutrition Cited (W460) 225 3.4 Note: “na” indicates that the statistic was not applicable

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Client Characteristics Table 3 provides a national overview of the client population served by ICFs/MR in 1999. The majority of clients (57.8%) were male. Over half (54.8%) were between the ages of 22 and 45. Another 29.7% were between the ages of 46 and 65 years. Small proportions of the population were younger than 22 (9.0%) or older than 65 (6.5%). Nearly all (98.7%) clients had some level of mental retardation (MR). Most clients’ retardation was considered either profound (48.1%) or severe (22.1%). Clients also had a number of other developmental disabilities. A small proportion of clients (6.2%) had autism, about one in five had cerebral palsy, and nearly two of every five had epilepsy. Physical and sensory disabilities also were common among ICF/MR clients. Over half of the clients were non-ambulatory, although most of those had some method for achieving mobility. Over half had some speech or language impairment that made expressive communication difficult. About sixteen percent had some level of hearing loss, and almost 40% had some level of visual impairment. In most cases, the hearing and vision losses were partial. There are a number of client characteristics that require particular types of care planning, either due to medical or behavioral needs. About one-fifth of clients had a medical care plan that required 24-hour nursing. Over one-third of ICF/MR clients received medications to control behaviors. Over 8% were physically restrained. Very small numbers were routinely treated in time-out rooms, and only one-tenth of one percent received painful or noxious stimuli as part of a treatment plan. Nationally, nearly 12% of clients resided in ICFs/MR as a result of a court-ordered admission. Nearly half (48%) of all clients were over age 18 and had a legal guardian. Distribution of Facility and Client Characteristics. Tables 4 and 5 present the distributions of characteristics across the national population of facilities. These tables emphasize the tremendous variation across ICFs/MR that is masked when one considers averages only. The first column of data presents the average (or total, in the case of numbers of facilities and beds) for the nation as a whole. Medians, minima and maxima are based on the distribution of characteristics across ICFs/MR. Together, these data show the variation and skew of facility characteristics for the nation. Because most characteristics are not normally distributed, the medians more closely represent the typical facility than do the average values of the various characteristics.

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Table 3 National Overview of Client Characteristics

Number Percent Demographics

Clients 111,532 100.0 0-22 Years 9,990 9.0 22-45 Years 61,125 54.8 46-65 Years 33,115 29.7 65 Years or Older 7,302 6.5 Male 64,487 57.8 Female 47,045 42.2

Disability Status Clients with Mental Retardation 110,134 98.7

Mild Mental Retardation 14,395 12.9 Moderate Mental Retardation 17,485 15.7 Severe Mental Retardation 24,637 22.1 Profound Mental Retardation 53,617 48.1

Clients with Autism 6,921 6.2 Clients with Cerebral Palsy 22,837 20.5 Clients with Epilepsy 44,356 39.8

Uncontrolled Epilepsy 9,347 8.4 Controlled Epilepsy 35,009 31.4

Physical Function Clients who are Non Ambulatory 57,719 51.8

Non-Ambulatory, but Mobile 38,975 34.9 Non-Ambulatory and Non-Mobile 18,744 16.8

Clients with Speech/Language Impairment 60,450 54.2 Clients with Hearing Impairment (Total) 17,753 15.9

Hard of Hearing 14,551 13.0 Deaf 3,202 2.9

Clients with Visual Impairment (Total) 42,952 38.5 Visually Impaired 33,992 30.5 Blind 8,960 8.0

Behavior Management and Other Characteristics Receive Drugs to Control Behavior 40,109 36.0 Physically Restrained 9,614 8.6 Using Time Out Rooms 1,243 1.1 Receiving Noxious or Painful Stimuli 82 0.1 Medical Care Plans 23,639 21.2 Court-Ordered Admissions 12,955 11.6 Over Age 18 with Legal Guardian 53,674 48.1

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On average, there were 19.2 beds per facility, but the median facility had only 6 beds (Table 4). Facility size ranged from 4 beds (the minimum allowed by statute) to 1317. The total number of employees per facility ranged from one to 2303 FTEs. The median (9.25) was far below the average (27.4). Direct care staff per facility ranged from 0.32 to 979.0, with a median of 8 and an average 18.4. There were 0.92 clients per direct care staff overall, and a median of 0.892. As noted above, there was tremendous variation in the client characteristics across facilities. Table 5 describes the distribution of client characteristics across the nation’s ICFs/MR. The first column shows the weighted average across facilities, and the second column shows the median value across facilities. The minimum and maximum values are not shown; with one exception, these values were 0 and 100 percent, respectively. That is, for each of the client characteristics described, there was at least one facility in the country in which no clients had the characteristic, and there was at least one facility in which all clients had the characteristic. The percent of clients with retardation was the only exception to this. The minimum value across facilities was 13.3%; this is discussed more below. The age distribution was highly skewed. While on average, 9% of all clients were under age 22, the median facility3 did not serve any clients who were this young. Similarly, the median facility had no clients age 65 or older, although 6.5% of all ICF/MR clients were elderly. Male clients outnumbered females throughout the system. On average, 57.8% of clients were male. This is similar to the median value of 58.3%. The minimum and maximum facility values (0 and 100 percent, respectively) indicate that there were single-sex facilities operating. As expected, most clients (98.7% on average, 100% median value) had some level of retardation. As noted above, mental retardation was the only client characteristic for which the minimum value in any facility exceeded zero. That is, there were no ICFs/MR that did not serve at least some clients with mental retardation. There was, however, at least one facility in which only 13% of the clients had mental retardation. While it is unusual for an ICF/MR to serve so few people with retardation, it is not impossible. ICFs/MR serve people with mental retardation or with “related conditions.” Persons with related conditions are those individuals who have a severe, chronic disability that meets all of the following conditions:

2 One facility with a ratio of 75 clients per direct care FTE was excluded from this analysis. The total number of employees in that facility was correct, but nursing staff doing direct care work appear to have been reported in the wrong column. 3 The median was calculated independently for each characteristic. The “median facility” refers to a facility that is at the mid—point of the distribution for the given characteristic. The median facility for any one characteristic is not necessarily the same facility as is at the median for any other characteristic; it refers to the median value for that characteristic only. Further, there may be more than one facility at the median value.

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Table 4 National Distribution of Facility Characteristics: Size and Staffing

Total Median Minimum Maximum

Facility Size Facilities (#) 6,591 na na na Beds (#) 126,450 na na na Beds per Facility (#) 19.2 6.0 4Ι 1317 Clients (#) 111,532 na na na Clients per Facility (#) 16.9 6.0 1.0 703 Occupancy Rate (%) 88.2 100 8 100

Staffing* Total Employees per Facility (FTEs) 27.4 9.25 1 2303 Direct Care Staff per Facility (FTEs) 18.4 8.0 0.32 979.0 Client-to-Direct Care Staff Ratio (#) 0.92 .89 0.19 17.3 RNs per Client (FTEs) 0.06 0.04 0 3.5 LPNs per Client (FTEs) 0.08 0.002 0 5.7

Notes: “na” indicates that this statistic is “not applicable” to the specific variable. The first column of data shows totals or averages for the nation, as appropriate for the item being reported. Facilities, beds, and clients are reported as the total across the nation. All other items are the weighted average across the nation. Other statistics (median, minimum, and maximum) indicate points in the distribution of facilities nationwide. * Staffing data are reported for 6509 facilities due to data cleaning Ι Excludes 1 facility with erroneous bed size data

(a) It is attributable to— (1) Cerebral palsy or epilepsy; or (2) Any other condition, other than mental illness, found to be closely related to

mental retardation because this condition results in impairment of general intellectual functioning or adaptive behavior similar to that of mentally retarded persons, and requires treatment or services similar to those required for these persons.

(b) It is manifested before the person reaches age 22. (c) It is likely to continue indefinitely. (d) It results in substantial functional limitations in three or more of the following

areas of major life activity: (1) Self-care (2) Understanding and use of language (3) Learning (4) Mobility (5) Self-direction (6) Capacity for independent living (42CFR435.1009).

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The distributions of other developmental disabilities also were skewed. The median facility had no clients with autism, although 6% of all clients had this disability. About one-fifth of all clients had cerebral palsy, although the same was true of only 12% of clients in the median facility. About 40% of clients overall had epilepsy, but only one-third of clients in the median facility had this disability. More than half of clients were non-ambulatory, and this was true in the median facility as well. Breaking this down into those who are mobile and those who are not showed a very different picture. In the median facility, 20% of clients were non-ambulatory and mobile, but no clients were non-ambulatory and non-mobile. The prevalence of speech/language impairments, hearing impairments, and visual impairments in the median facilities were similar to the prevalences in the population as a whole (i.e., the average). When hearing and visual impairments were broken down by level of impairment, the picture again changed. The median facility had no clients with total loss of either vision or hearing. The median facility had no clients with special care plan needs, other than medication to control behaviors, for which the median and average values were similar. 4.2 Characteristics by State Facility Characteristics Table 6 presents information on facility characteristics, including size and ownership, for each state. Capacity There were 6591 ICFs/MR in our database. All states except Alaska had at least one ICF/MR in operation during this time (1999), with the number per state ranging from 1 (NH, OR) to 1015 (CA). The 126,450 ICF/MR beds also varied across states, with fewer than 100 beds each in Vermont, New Hampshire, and Oregon, and more than 10,000 beds each in California, Illinois, New York, and Texas. The average number of beds per facility ranged from five in Hawaii to 522 in New Jersey. The median facility size for each state was either the same or smaller than the average facility size for all states except New Jersey (average =522, median=608). The median ranged from 5 (Hawaii and Rhode Island) to 608 in New Jersey. Occupancy rates were high in most states, and ranged from 62% in Massachusetts to a high of 100% in Vermont and New Hampshire. Table 7 shows the distribution of facility sizes across states, with facilities categorized as having 4-8 beds, 7-16 beds, 17-50 beds, 51-100 beds, 101-150 beds, and more than 150 beds. Nationally, 71% of ICFs/MR had 8 beds or fewer; but in some states, over half the facilities had more than 100 beds.

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Table 5 National Distribution of Client Characteristics Across Facilities

Weighted Average

(%)

Median (%)

Demographics 0-22 Years 9.0 0.0 22-45 Years 54.8 60.0 46-65 Years 29.7 25.0 65 Years or Older 6.5 0.0 Male 57.8 58.3 Female 42.2 41.7

Disability Status Mental Retardation 98.7 100.0

Mild Mental Retardation 12.9 4.1 Moderate Mental Retardation 15.7 16.7 Severe Mental Retardation 22.1 20.0 Profound Mental Retardation 48.1 25.0

Clients with Autism 6.2 0.0 Clients with Cerebral Palsy 20.5 12.5 Total Clients with Epilepsy 39.8 33.3

Uncontrolled Epilepsy 8.4 0.0 Controlled Epilepsy 31.4 25.0

Physical Function Total Clients who are Non Ambulatory 51.8 50.0

Non-Ambulatory, but Mobile 34.9 20.0 Non-Ambulatory and Non-Mobile 16.8 0.0

Speech/Language Impairment 54.2 48.2 Total Clients with Hearing Impairment 15.9 11.1

Hard of Hearing 13.0 5.0 Deaf 2.9 0.0

Total Clients with Visual Impairment 38.5 37.5 Visually Impaired 30.5 33.3 Blind 8.0 0.0

Behavior Management and Other Characteristics Receive Drugs to Control Behavior 36.0 35.4 Physically Restrained 8.6 0.0 Using Time Out Rooms 1.1 0.0 Receiving Noxious or Painful Stimuli 0.1 0.0 Medical Care Plans 21.2 0.0 Court-Ordered Admissions 11.6 0.0 Over Age 18 with Legal Guardian 48.1 27.3

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Ownership Table 6 also presents information about the patterns of ICF/MR ownership across states. In most states, the number of not-for-profit facilities exceeded the number of for-profit private facilities. There were seven states in which there were no privately owned facilities of any type (Georgia, Massachusetts, Maryland, Michigan, Montana, New Jersey, and Oregon). There were only three states that had no publicly owned facilities (state or other public entities): New Hampshire, Vermont and West Virginia. Staffing Levels Table 8 presents information on staffing levels for each state. States employed a total of 178,064 FTEs in ICFs/MR. Of these, 120,092 FTEs were employed in direct care positions. The number of clients served by each direct care employee ranged from 0.48 in Oregon and Vermont to 1.30 in Wisconsin. New Hampshire, Rhode Island, Tennessee, and Vermont all had over .50 FTE of nursing staff per client (RN and LPN combined). With these notable exceptions, the amount of nursing staff generally was low. Nursing time was not distributed across states in the same way as total direct care time. Vermont, which had one of the highest levels of nurse staffing, also had one of the lowest client to direct care staff ratios. New Hampshire and Rhode Island both had high levels of nurse staffing and high ratios of clients to direct care staff. It is important to note that these three states each have very few ICFs/MR. Vermont has two, New Hampshire has only 1, and Rhode Island has 4. Thus, these ratios may be heavily influenced by a single facility (or represent a single facility, in New Hampshire), and so may show a specialized situation. Deficiencies Table 9 shows information about the numbers and types of deficiencies by state. On average, there were 2.7 health deficiencies cited per facility. There were no deficiencies cited for New Hampshire’s sole facility, or for the four facilities in Rhode Island. Alabama had the highest number of deficiencies cited per facility (9.1, averaged across its 7 facilities). Table 9 also shows the number of facilities with no deficiencies cited. This number ranged from zero, (i.e., all facilities had at least one citation), in Colorado, Maryland, Michigan, Montana and Oregon to 254 in Indiana and California and 435 in Texas. These numbers must be considered in the context of the total number of facilities in the state. On a percentage basis, states have anywhere from zero to 100 of facilities with no deficiencies cited, with a national average of slightly over one-third with no deficiencies. In the states with the largest number of facilities with no deficiencies cited, these represent somewhat less than half of the facilities in Texas and Indiana, and only one-quarter of the total facilities in California.

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Table 6 Facility Characteristics by State: Size and Ownership

State Facilities(#)

Beds (#)

Average Beds per Facility

(#)

Median Beds per Facility

(#)

Occupancy Rate (%)

For-Profit Facilities

(#)

Not-for-Profit

Facilities (#)

State Owned Facilities

(#)

Other Publicly Owned

(#) AL 7 733 105 75 94.5 0 2 4 1AR 40 1,817 45 10 95.9 3 30 6 1AZ 11 217 20 17 79.7 0 1 9 1CA 1,015 10,015 10 6 88.5 672 236 4 103CO 3 186 62 30 77.4 0 1 2 0CT 125 1,360 11 6 97.9 0 65 60 0DC 128 788 6 6 96.7 85 41 0 2DE 2 361 181 181 89.2 0 1 1 0FL 108 3,500 32 24 97.2 19 47 42 0GA 8 1,627 203 135 76.0 0 0 8 0HI 22 107 5 5 96.3 0 21 1 0IA 124 3,060 25 8 72.4 16 92 2 14ID 67 597 9 8 96.0 30 25 1 11IL 318 11,901 37 16 87.5 67 217 11 23IN 552 5,101 9 8 94.7 265 271 4 12KS 36 1,272 35 8 69.3 3 31 2 0KY 12 1,208 101 61 96.2 3 2 7 0LA 473 6,763 14 6 83.8 190 202 27 54MA 7 2,203 315 249 62.3 0 0 7 0MD 4 830 208 200 71.2 0 0 4 0ME 28 283 10 8 93.6 2 20 4 2MI 2 413 207 207 67.6 0 0 2 0MN 266 3,081 12 8 95.6 114 129 16 7MO 19 1,437 76 40 91.0 2 6 10 1MS 13 2,546 196 140 96.9 5 0 8 0

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Table 6 Facility Characteristics by State: Size and Ownership

State Facilities(#)

Beds (#)

Average Beds per Facility

(#)

Median Beds per Facility

(#)

Occupancy Rate (%)

For-Profit Facilities

(#)

Not-for-Profit

Facilities (#)

State Owned Facilities

(#)

Other Publicly Owned

(#) MT 2 180 90 90 71.7 0 0 2 0NC 330 5,227 16 6 88.4 107 196 6 21ND 66 739 11 7 83.1 10 51 4 1NE 4 710 178 126 89.7 0 3 1 0NH 1 26 26 26 100.0 0 1 0 0NJ 5 2,609 522 608 95.9 0 0 5 6

NM 40 283 7 8 97.9 1 32 1 1NV 20 277 14 6 97.8 14 2 4 0NY 737 11,382 15 10 86.6 0 683 53 0OH 457 7,915 17 8 98.5 129 183 75 70OK 38 1,948 51 16 79.7 9 26 2 1OR 1 86 86 86 72.1 0 0 1 0PA 217 6,014 28 6 86.9 8 199 8 2RI 4 43 11 5 86.0 1 0 3 0SC 144 2,814 20 8 75.6 1 81 29 33SD 4 276 69 15 83.7 0 3 1 0TN 82 1,654 20 8 94.3 1 78 3 0TX 894 14,127 16 6 92.5 574 134 58 128UT 14 965 69 45 81.2 5 8 1 0VA 17 2,617 154 15 72.3 0 7 5 5VT 2 12 6 6 100.0 0 2 0 0WA 17 1,079 63 34 89.8 2 7 8 0WI 41 3,397 83 40 85.9 8 7 3 23WV 62 514 8 8 99.0 43 19 0 0WY 2 150 75 75 77.3 0 0 2 0U.S. 6,591 126,450 19 6 88.2 2389 3162 517 523

24

Table 7 Distribution of Facilities Across Bed Size by State

Percent of Facilities by Bed Size

State 4-8 9-16 17-50 51-100 101-150 >150 Facilities (#)

AL 28.6 14.3 0.0 14.3 0.0 42.9 7 AR 0.0 75.0 5.0 7.5 5.0 7.5 40 AZ 0.0 45.5 45.5 9.1 0.0 0.0 11 CA 94.7 3.5 0.1 0.9 0.4 0.4 1,015 CO 0.0 33.4 33.3 0.0 33.3 0.0 3 CT 58.4 23.2 18.4 0.0 0.0 0.0 125 DC 99.2 0.8 0.0 0.0 0.0 0.0 128 DE 0.0 0.0 0.0 50.0 0.0 50.0 2 FL 34.3 3.7 37.0 19.4 5.6 0.0 108 GA 0.0 0.0 0.0 25.0 50.0 25.0 8 HI 95.5 4.5 0.0 0.0 0.0 0.0 22 IA 71.0 10.5 13.7 2.4 0.8 1.6 124 ID 91.0 7.5 0.0 0.0 1.5 0.0 67 IL 14.8 66.7 3.5 8.8 2.8 3.5 318 IN 97.8 0.0 0.7 1.1 0.0 0.4 552 KS 61.1 25.0 2.8 5.6 0.0 5.6 36 KY 25.0 0.0 8.3 41.7 0.0 25.0 12 LA 95.3 0.2 1.5 0.4 1.1 1.5 473 MA 0.0 0.0 0.0 14.3 0.0 85.7 7 MD 0.0 0.0 25.0 0.0 25.0 50.0 4 ME 57.1 28.6 14.3 0.0 0.0 0.0 28 MI 0.0 0.0 0.0 0.0 0.0 100.0 2 MN 55.3 36.1 6.8 1.5 0.4 0.0 266 MO 15.8 21.1 26.3 15.8 5.3 15.8 19 MS 0.0 0.0 0.0 7.7 46.2 46.2 13 MT 0.0 0.0 0.0 50.0 50.0 0.0 2 NC 85.8 9.1 2.7 0.0 1.2 1.2 330 ND 89.4 3.0 3.0 4.5 0.0 0.0 66 NE 0.0 25.0 0.0 0.0 50.0 25.0 4 NH 0.0 0.0 100.0 0.0 0.0 0.0 1 NJ 0.0 0.0 0.0 0.0 20.0 80.0 5 NM 72.5 27.5 0.0 0.0 0.0 0.0 40 NV 80.0 10.0 0.0 10.0 0.0 0.0 20 NY 28.0 64.6 5.3 0.9 0.1 1.1 737 OH 51.2 23.0 19.9 4.4 1.5 0.0 457

25

Table 7 Distribution of Facilities Across Bed Size by State

Percent of Facilities by Bed Size

State 4-8 9-16 17-50 51-100 101-150 >150 Facilities (#)

OK 34.2 26.3 0.0 18.4 15.8 5.3 38 OR 0.0 0.0 0.0 0.0 100.0 0.0 1 PA 84.8 0.5 5.1 3.7 2.3 3.7 217 RI 75.0 0.0 25.0 0.0 0.0 0.0 4 SC 82.6 8.3 1.4 2.8 1.4 3.5 144 SD 25.0 50.0 0.0 0.0 0.0 25.0 4 TN 93.9 0.0 2.4 0.0 0.0 3.7 82 TX 88.4 7.2 0.3 1.8 0.7 1.7 894 UT 0.0 21.4 35.7 35.7 0.0 7.1 14 VA 29.4 29.4 5.9 5.9 0.0 29.4 17 VT 100.0 0.0 0.0 0.0 0.0 0.0 2 WA 41.2 0.0 11.8 11.8 29.4 5.9 17 WI 0.0 4.9 53.7 22.0 7.3 12.2 41 WV 93.5 3.2 3.2 0.0 0.0 0.0 62 WY 0.0 0.0 0.0 100.0 0.0 0.0 2 U.S. 71.1 18.0 5.1 2.7 1.3 1.9 6,591

26

Table 8 Facility Characteristics by State: Staffing*

State Total Employees (FTEs)

Direct Care Employees (FTEs)

Clients per Direct Care Staff (#)

RNs per Client (FTEs)

LPNs per Client (FTEs)

AL 1,398.9 818.8 0.84 0.07 0.04AR 3,359.4 1,622.9 1.07 0.02 0.12AZ 356.5 292.9 0.59 0.11 0.11CA 11,259.6 8,724.3 0.99 0.06 0.06CO 286.0 269.4 0.53 0.11 0.01CT 4,711.9 2,199.0 0.61 0.07 0.07DC 1,566.8 1,340.6 0.56 0.07 0.18DE 816.1 394.4 0.82 0.15 0.02FL 5,293.3 3,937.0 0.85 0.07 0.11GA 2,017.0 1,260.0 0.98 0.06 0.14HI 166.3 151.9 0.68 0.08 0.04IA 4,791.5 3,080.7 0.71 0.08 0.06ID 1,157.6 1,062.6 0.53 0.04 0.10IL 10,743.8 8,338.2 1.24 0.05 0.05IN 5,157.6 4,502.9 1.07 0.05 0.05KS 1,762.0 1,070.8 0.82 0.05 0.11KY 1,998.7 1,315.8 0.88 0.06 0.09LA 8,685.8 6,299.8 0.89 0.06 0.06MA 4,125.0 1,976.6 0.69 0.17 0.13MD 784.5 664.0 0.89 0.10 0.10ME 633.5 382.0 0.69 0.08 0.13MI 711.3 356.3 0.78 0.10 0.23MN 3,931.3 3,141.8 0.93 0.04 0.06MO 3,456.8 2,188.9 0.60 0.05 0.08MS 3,295.0 2,017.0 1.22 0.03 0.09MT 432.2 185.2 0.70 0.07 0.15

27

Table 8 Facility Characteristics by State: Staffing*

State Total Employees (FTEs)


Clients per Direct Care Staff (#)

RNs per Client (FTEs)

LPNs per Client (FTEs)

NC 11,929.5 6,675.6 0.69 0.08 0.07ND 1,032.0 859.8 0.71 0.05 0.06NE 1,359.8 667.3 0.95 0.03 0.06NH 37.5 24.0 1.08 0.27 0.25NJ 3,648.0 2,013.0 1.24 0.05 0.10NM 384.4 306.9 0.90 0.12 0.07NV 494.8 345.9 0.77 0.09 0.12NY 20,638.0 12,672.9 0.78 0.07 0.06OH 11,235.4 7,468.2 1.04 0.06 0.11OK 1,533.7 1,318.2 1.17 0.01 0.08OR 142.0 130.0 0.48 0.13 0.06PA 9,311.6 5,590.9 0.93 0.09 0.07RI 76.5 35.0 1.06 0.41 0.21SC 2,844.6 2,418.4 0.87 0.05 0.14SD 460.9 267.6 0.86 0.07 0.01TN 3,601.5 2,824.6 0.55 0.16 0.33TX 14,352.8 11,069.1 1.16 0.01 0.04UT 1,430.0 774.2 1.01 0.04 0.10VA 3,093.5 2,413.2 0.78 0.07 0.06VT 35.1 25.1 0.48 0.46 0.38WA 1,954.8 1,282.4 0.76 0.13 0.12WI 4,353.1 2,238.4 1.30 0.08 0.09WV 966.8 845.5 0.60 0.07 0.20WY 249.0 235.0 0.49 0.09 0.03U.S. 178,063.6 120,092.0 0.92 0.06 0.08

* N = 6509 facilities due to data cleaning

28

In addition to looking at deficiencies as a whole, Table 9 also shows the number of facilities in each state that were cited for a “condition of participation.” A citation indicating failure to meet a condition of participation results in review and possible decertification of an ICF/MR. Thus, such citations can be understood as indicating the most fundamental concerns. In seventeen states, there were no conditions of participation cited for any facility. In most states, the numbers of facilities with conditions of participation cited represent a small proportion of the total number of facilities. The states in which the greatest proportion of facilities had conditions of participation cited tended to be states with fewer facilities (e.g., Alabama, Colorado, Kentucky, Mississippi, Nebraska, Rhode Island, Vermont). This reflects the impact of the small denominator. However, the limited number of facilities also means that the closure of any one can have a dramatic impact on the options available for people with developmental disabilities. Table 10 shows the percent of facilities in each state that received each of ten specific citations, which provide insight into key aspects of quality of life and quality of care. There is a lot of variation in the frequency with which these deficiencies were cited in states, but none was cited very often. The most frequently cited was the lack of an active treatment plan (W249), which was cited in about one-fifth of all surveys. Across states, this deficiency was cited in half or more of the facilities in Alabama, Montana, North Carolina, Nebraska, South Carolina, Vermont, and Washington. Given the small number of facilities in some states, percentages can be deceivingly impressive. It is therefore especially interesting to note that, among these seven states, North Carolina and South Carolina each have many facilities (330 and 144, respectively). There was only one other case in which a deficiency was cited in half of the facilities in a state, where the state had more than 2 facilities. In Washington, DC, the lack of basic health care (W322) was cited in 60 of the 128 facilities. Figure 1 shows the deficiencies cited most frequently across the country. By far the most commonly cited deficiency was W249, indicating that 1413 facilities failed to implement an active treatment program when the Individual Program Plan (IPP) was formulated. Other frequently cited deficiencies also addressed the IPP and active treatment plans. These included W262 (committee reviews, approves, monitors IPPs) which was cited for 373 facilities; W242 (program plan identifies location of information), cited for 383 facilities; W159 (active treatment program coordinated by

29

Table 9 Facility Characteristics by State: Deficiency Data

State Facilities (#)

Total Health Deficiencies

(#)

Health Deficiencies per Facility

(#)

Facilities with No

Deficiencies Cited

(#)

Facilities with Conditions of Participation

Cited (#)

AL 7 64 9.1 3 3 AR 40 59 1.5 11 0 AZ 11 14 1.3 5 0 CA 1015 4,507 4.4 254 57 CO 3 16 5.3 0 1 CT 125 348 2.8 34 7 DC 128 587 4.6 5 9 DE 2 1 0.5 1 0 FL 108 337 3.1 36 8 GA 8 47 5.9 2 0 HI 22 38 1.7 10 1 IA 124 191 1.5 44 1 ID 67 507 7.6 5 11 IL 318 810 2.5 132 10 IN 552 983 1.8 254 17 KS 36 92 2.6 3 3 KY 12 76 6.3 9 3 LA 473 768 1.6 211 0 MA 7 23 3.3 1 0 MD 4 8 2.0 0 0 ME 28 156 5.6 3 3 MI 2 13 6.5 0 0 MN 266 342 1.3 166 5 MO 19 62 3.3 5 1 MS 13 58 4.5 6 3 MT 2 2 1.0 0 0 NC 330 1,466 4.4 35 13 ND 66 109 1.7 20 0 NE 4 17 4.3 2 1 NJ 1 0 0.0 1 0 NH 5 30 6.0 2 0 NM 40 63 1.6 19 2

30

Table 9 Facility Characteristics by State: Deficiency Data


Total Health Deficiencies

(#)

Health Deficiencies per Facility

(#)

Facilities with No

Deficiencies Cited

(#)

Facilities with Conditions of Participation

Cited (#)

NV 20 49 2.5 9 2 NY 737 1,816 2.5 192 13 OH 457 1,255 2.7 197 27 OK 38 98 2.6 16 1 OR 1 3 3.0 0 0 PA 217 311 1.4 121 7 RI 4 0 0.0 4 0 SC 144 729 5.1 10 4 SD 4 20 5.0 1 1 TN 82 101 1.2 38 0 TX 894 1,350 1.5 435 32 UT 14 83 5.9 1 2 VA 17 26 1.5 8 0 VT 2 10 5.0 1 1 WA 17 64 3.8 3 2 WI 41 108 2.6 18 2 WV 62 246 4.0 12 5 WY 2 2 1.0 1 0 U.S. 6,591 18,065 2.7 2,346 258

31

Table 10 Percentage of Facilities with Select Deficiencies Cited by State


Clients Rights (W125; %)

Freedom from Abuse (W127; %)

Freedom from

Restraint (W128; %)

Personal Privacy

(W129; %)

Freedom of Association (W133; %)

Personal Skills

Training (W242; %)

Active Treatment

Plan (W249; %)

Protection of Rights

(W285; %)

Health Care (W322; %)

Nutrition (W460; %)

AL 7 14.3 42.9 14.3 0.0 0.0 0.0 57.1 42.9 0.0 14.3AR 40 5.0 0.0 0.0 0.0 0.0 0.0 15.0 0.0 0.0 2.5AZ 11 0.0 0.0 0.0 0.0 0.0 9.1 18.2 0.0 0.0 9.1CA 1,015 4.3 1.9 2.5 1.9 0.1 7.8 27.8 1.9 8.9 5.7CO 3 0.0 33.3 0.0 0.0 0.0 100.0 33.3 0.0 0.0 0.0CT 125 3.2 0.8 0.0 0.8 0.0 7.2 15.2 3.2 0.8 4.0DC 128 0.0 1.6 0.0 0.8 0.0 2.3 34.4 2.3 60.2 8.6DE 2 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0FL 108 2.8 2.8 1.9 1.9 0.9 0.9 19.4 0.9 0.9 9.3GA 8 0.0 12.5 0.0 12.5 0.0 0.0 25.0 12.5 12.5 0.0HI 22 0.0 0.0 0.0 0.0 0.0 4.5 18.2 0.0 4.5 0.0IA 124 0.0 0.0 0.8 0.0 0.0 9.7 6.5 0.0 0.0 0.0ID 67 1.5 0.0 3.0 0.0 0.0 0.0 44.8 1.5 16.4 4.5IL 318 3.5 0.3 1.9 0.3 0.0 3.5 18.9 0.9 0.9 1.6IN 552 1.1 0.9 1.6 0.5 0.2 4.5 22.1 2.2 1.4 0.9KS 36 0.0 0.0 2.8 0.0 0.0 0.0 0.0 2.8 2.8 0.0KY 12 0.0 16.7 0.0 0.0 0.0 0.0 16.7 0.0 16.7 8.3LA 473 0.0 0.0 0.0 0.4 0.2 0.6 6.6 1.1 3.6 6.3MA 7 0.0 0.0 0.0 0.0 0.0 0.0 14.3 0.0 14.3 0.0MD 4 0.0 0.0 0.0 0.0 0.0 0.0 25.0 0.0 0.0 0.0ME 28 7.1 0.0 3.6 7.1 0.0 10.7 28.6 0.0 10.7 7.1MI 2 0.0 0.0 0.0 0.0 0.0 0.0 0.0 50.0 50.0 0.0MN 266 0.0 0.8 1.9 0.0 0.0 5.6 12.4 0.0 0.4 1.9MO 19 0.0 0.0 0.0 0.0 0.0 10.5 5.3 0.0 10.5 5.3MS 13 7.7 0.0 0.0 0.0 0.0 7.7 30.8 0.0 0.0 0.0

32

Table 10 (continued) Percentage of Facilities with Select Deficiencies Cited by State


Clients Rights (W125)

(%)


Freedom from

Restraint (W128; %)

Personal Privacy

(W129; %)

Freedom of Association (W133; %)

Personal Skills

Training (W242; %)

Active Treatment

Plan (W249; %)

Protection of Rights

(W285; %)

Health Care (W322; %)

Nutrition (W460; %)

MT 2 0.0 0.0 0.0 0.0 0.0 0.0 50.0 0.0 0.0 0.0NC 330 3.0 0.3 1.2 0.3 0.0 17.3 51.8 0.3 1.2 6.1ND 66 0.0 0.0 0.0 3.0 0.0 1.5 19.7 0.0 0.0 3.0NE 4 0.0 0.0 0.0 0.0 0.0 0.0 50.0 0.0 0.0 0.0NH 1 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0NJ 5 0.0 0.0 0.0 0.0 0.0 20.0 40.0 0.0 0.0 0.0

NM 40 0.0 0.0 2.5 5.0 0.0 0.0 0.0 0.0 2.5 0.0NV 20 0.0 0.0 0.0 5.0 0.0 0.0 5.0 5.0 5.0 0.0NY 737 0.1 0.0 0.0 1.5 0.1 7.7 30.4 0.8 18.5 3.1OH 457 0.9 0.4 0.7 1.3 0.2 10.9 22.5 2.0 12.5 2.8OK 38 0.0 2.6 15.8 0.0 0.0 7.9 26.3 2.6 5.3 0.0OR 1 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0PA 217 0.0 1.8 1.4 0.0 0.0 5.1 8.3 0.0 2.3 1.4RI 4 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0SC 144 0.7 0.7 8.3 0.0 0.0 14.6 60.4 1.4 1.4 0.0SD 4 0.0 25.0 50.0 0.0 0.0 0.0 25.0 0.0 0.0 0.0TN 82 0.0 3.7 0.0 0.0 0.0 0.0 11.0 0.0 7.3 2.4TX 894 0.4 1.7 0.2 0.8 0.0 0.8 4.0 0.2 2.5 1.6UT 14 0.0 0.0 0.0 0.0 0.0 0.0 21.4 28.6 0.0 0.0VA 17 0.0 0.0 0.0 0.0 0.0 0.0 5.9 0.0 0.0 0.0VT 2 0.0 0.0 0.0 0.0 0.0 0.0 50.0 0.0 0.0 0.0WA 17 5.9 0.0 0.0 0.0 0.0 5.9 52.9 0.0 5.9 0.0WI 41 0.0 2.4 4.9 0.0 0.0 7.3 22.0 0.0 4.9 2.4WV 62 3.2 1. 6.5 1.6 0.0 3.2 41.9 4.8 22.6 12.9WY 2 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0U.S. 6,591 1.5 1.1 1.4 1.0 0.1 5.8 21.4 1.3 7.2 3.4

33

Figure 1Most Frequently Cited Deficiencies

1413

645

474

461

383

373

370

367

353

349

335

314

312

300

281

274

272

258

253

237

0 200 400 600 800 1000 1200 1400 1600

Active Treatment Program Implemented when IPP Formulated (W249)

All Drugs Administered without Error (W369)

Facility Provides Preventative and General Medical Care (W322)

Outside Services meets needs of Clients (W120)

Program Plan Identifies Location of Information (W242)

Committee Reviews, Approves, Monitors IPPS (W262)

Furnish, Maintain Specialized Equipment Devices (W436)

Nursing Services Provided in Accordance with Client Needs (W331)

Active Treatment Program Coordinated by QMRP (W159)

Plan includes Opportunity for Client Choices (W247)

IPP States Objectives Necessary to Meet Clients Needs (W227)

Employee Training is Provided (W189)

Committee Insures IPPS Conducted with the Consent of Client (W263)

Governing Body Exercises Direction (W104)

Privacy during Care and Treatment is Ensured (W130)

Alleged Violations Investigated Thoroughly (W154)

Evacuation Drills held at least Quarterly (W440)

Drugs Administered in Accordance with Physician Orders (W368)

IPP Reviewed, Revised When Client Fails to Progress (W257)

Water Temperature not to Exceed 110 Degrees (W426)

Number of Facilities

34

QMRP), cited for 353 facilities; W247 (plan includes opportunity for client choices), cited for 349 facilities; W227 (IPP states objectives necessary to meet client needs), cited for 227 facilities; W263 (committee insures IPPs conducted with the consent of the client), cited for 312 facilities; and W257 (IPP reviewed, revised when client fails to progress), cited for 253 facilities. Medical concerns, including proper medication administration and the provision of preventive and general medical care, were the second and third most frequently cited concerns. Client Characteristics It was not the case that those states with the most facilities necessarily served the most clients. Table 11 shows the number of facilities and clients in each state, and the states’ rank from smallest (1) to largest (50). While in many cases, the rankings were similar (e.g., NH ranked first with only one provider and second with 26 clients), this was not always the case. For example, Mississippi ranked 19th in terms of facilities (13 ICFs/MR) and 37th in terms of clients (2468 people). Figure 2 provides a graphic illustration of this disparity between clients and facilities. It shows the percent of total U.S. facilities and percent of total U.S. clients located in each state. In the most extreme case, almost 16% of all facilities in the country were located in California, but only 8% of all national ICF/MR clients resided in that state. By contrast, Wisconsin had about 1% of all facilities and 3% of all clients. Tables 12A-12E provide an overview of client characteristics by state. Numbers of People Served The variation in number of beds was reflected in the number of people served in ICFs/MR (Table 12A). Both Texas and Illinois served over 10,000 clients in ICFs/MR in 1999, while New Hampshire, Rhode Island, and Vermont each served fewer than 50 people in such settings. The average number of clients served by each facility ranged from five in Hawaii to 500 in New Jersey. There were only nine states in which the average number of clients per facility exceeded 100. Age and Gender Distributions Table 12A shows the age distribution of ICF/MR clients varied across states. The majority of clients were between the ages of 22 and 65 in most states. New Hampshire was a notable exception. Its only ICF/MR served children exclusively. Table 12B shows the gender distribution of ICF/MR clients across states. The majority of ICF/MR clients were male in all but two states. Three-quarters of the clients in Vermont’s two ICFs/MR were female, as were 53% of the clients in Wyoming’s two facilities.

35

Table 11 Numbers of Facilities and Clients Served and

Rank Order by State State Number of

Facilities Number of

Clients Facility Rank Client Rank

AL 7 693 14 21 AR 40 1,742 29 33 AZ 11 173 17 9 CA 1,015 8,861 50 47 CO 3 144 8 8 CT 125 1,331 38 29 DC 128 762 39 22 DE 2 322 3 15 FL 108 3,403 36 41 GA 8 1,236 16 27 HI 22 103 25 5 IA 124 2,215 37 36 ID 67 573 34 17 IL 318 10,408 43 49 IN 552 4,831 47 43 KS 36 882 27 24 KY 12 1,162 18 26 LA 473 5,665 46 45 MA 7 1,373 14 30 MD 4 591 9 18 ME 28 265 26 11 MI 2 279 3 14 MN 266 2,945 42 40 MO 19 1,307 23 28 MS 13 2,468 19 37 MT 2 129 3 7 NC 330 4,621 44 42 ND 66 614 33 19 NE 4 637 9 20 NH 1 26 1 2 NJ 5 2,501 13 38 NM 40 277 29 13 NV 20 271 24 12 NY 737 9,861 48 48 OH 457 7,800 45 46 OK 38 1,553 28 31 OR 1 62 1 4

36

Table 11 Numbers of Facilities and Clients Served and

Rank Order by State State Number of

Facilities Number of

Clients Facility Rank Client Rank

PA 217 5,227 41 44 RI 4 37 9 3 SC 144 2,127 40 35 SD 4 231 9 10 TN 82 1,559 35 32 TX 894 13,066 49 50 UT 14 784 20 23 VA 17 1,892 21 34 VT 2 12 3 1 WA 17 969 21 25 WI 41 2,917 31 39 WV 62 509 32 16 WY 2 116 3 6 U.S. 6,591 111,532 na na

Note: Ranks are from smallest (1) to largest (50). “na” indicates that the statistic was not applicable

37

38

Figure 2Percent of Total U.S. Facilities and Total U.S. Clients Located in Each State

0.0%

2.0%

4.0%

6.0%

8.0%

10.0%

12.0%

14.0%

16.0%

AL AR AZ CA CO CT DC DE FL GA HI IA ID IL IN KS KY LA MA MD ME MI MN MO MS MT NC ND NE NH NJ NM NV NY OH OK OR PA RI SC SD TN TX UT VA VT WA WI WV WY

Percent of Providers

Percent of Clients

Table 12A Client Characteristics by State: Numbers of Facilities and Clients, and Distribution by Client Age State Facilities

(#) Clients

(#) (#)

0 - 22 Years (%)

22-45 Years (%)

46-65 Years (%)

65+ Years (%)

7 693 99.0 3.2 55.8 35.1 5.9AR 40 43.6 17.9 58.6 23.4 0.2AZ 11 173 15.7 56.1 31.2 0.6CA 1,015 8,861 8.7 15 55.6 3.1CO 3 144 48.0 4.2 57.6 35.4 2.8CT 125 1,331 10.6 0.9 44.8 42.6 11.7DC 762 6.0 2.9 54.2 34.5 8.4DE 2 322 1.9 52.5 34.8 10.9FL 108 3,403 31.5 7.3 27 4.2GA 8 1,236 154.5 3.4 55.5 36.5HI 22 103 4.7 4.9 56.3 34 4.9

124 2,215 17.9 17.8 54.5 25 2.8ID 67 8.6 22.2 53.4 22.3 2.1IL 318 10,408 32.7 55.9 30 6.9IN 552 4,831 8.8 8.6 53.9 5.7KS 36 882 24.5 5.6 58.3 32 4.2KY 12 1,162 96.8 4.1 64.1 30.6 1.2LA 5,665 12.0 13 59 24.5 3.4MA 7 1,373 0.0 35.9 47 17.1MD 4 591 147.8 3.9 36.2 4.1ME 28 265 9.5 7.5 54 32.1MI 2 279 139.5 10.0 67.4 21.1 1.4

Clients per Facility

AL 1,742

12.126.3

128161.0

61.44.6

IA 573

7.231.8

473196.1

55.86.4

MN 2266 ,945 11.1 53.4 31.36.1 9.2

13 2,468 189.8 15.9 49.8 27.7 6.62 129 64.5 0.0 55 38.8 6.2

MO 19 1,307 68.8 4.4 60.6 31.4 3.6MS MT

39

Table 12A (continued) Client Characteristics by State: Numbers of Facilities and Clients, and Distribution by Client Age

State Facilities(#)

Clients (#)

(#)

0 - 22 Years (%)

22-45 Years (%)

46-65 Years (%)

65+ Years

NC 330 4,621 14.0 14.4 55.9 25.8ND 66 614 9.3 17.8 45.6 30.1NE 4 637 159.3 5.8 50.4 35.6NH 1 26 26.0 100.0 0.0 0.0NJ 5 2,501 500.2 1.1 55.7 31.7

NM 40 277 6.9 6.5 57.0 27.8NV 20 271 13.6 24.4 64.2 11.1NY 737 9,861 13.4 8.7 57.2 26OH 457 7,800 17.1 7.0 52.1 32.3OK 38 1,553 40.9 3.9 49.1 38.2OR 1 62 62.0 0.0 38.7 48.4PA 217 5,227 24.1 6.0 51.3 33.4RI 4 37 9.3 54.1 43.2 2.7SC 144 2,127 14.8 7.4 53.3 31.8SD 4 231 57.8 14.7 55.0 28.6TN 82 1,559 19.0 9.9 57.6 26.6TX 894 13,066 14.6 9.2 56.9 28.0UT 14 784 56.0 11.4 52.7 29.7VA 17 1,892 111.3 9.0 56.7 29.0VT 2 12 6.0 0.0 66.7 16.7WA 17 969 57.0 0.9 48.8 43.8WI 41 2,917 71.1 4.9 43.1 36.0WV 62 509 8.2 7.7 52.3 37.3WY 2 116 58.0 0.9 50.9 31.0U.S. 6,591 111,532 16.9 9 54.8 29.7

Clients per Facility (%)

3.96.58.20.0

11.58.70.48.28.68.8

12.99.200

7.51.75.95.96.35.2

16.76.5

16.02.8

17.26.5

40

Table 12B

Client Characteristics by State: Gender and Level of Retardation State

(%) Female

(%) Clients with

Mental Retardation

(MR; %)

Clients with Mild MR

(%)

Clients with Moderate MR

Clients with Severe MR

(%)

Clients with Profound MR

(%)

AL 60.6 39.4 11.1 9.2 18.5 61.0AR 60.4 39.6 7.8 12.9 21.7 57.6AZ 57.2 42.8 2.9 20.8 23.7 52.6CA 56.5 43.5 13.2 14.5 19.9 50.2CO 70.1 29.9 13.2 9.7 62.5 14.6CT 58.0 42.0 7.8 14.1 24.8 50.5DC 60.6 39.4 7.6 20.3 21.5 50.4DE 53.7 46.3 13.7 4.3 15.5 61.2FL 57.6 42.4 6.6 8.1 12.8 70.9GA 58.6 41.4 6.1 12.5 20.9 60.5HI 64.1 35.9 7.8 7.8 33.0 50.5IA 60.9 39.1 11.8 16.2 23.3 46.4ID 64.2 35.8 17.6 17.8 30.0 33.9IL 56.8 43.2 9.0 20.7 24.2 45.8IN 58.1 41.9 33.0 22.9 19.9 23.5KS 62.0 38.0 13.2 13.9 24.1 48.8KY 58.0 42.0 6.8 17.0 30.1 45.5LA 59.0 41.0 18.5 19.4 22.5 38.5MA 60.0 40.0 12.2 12.8 22.9 51.9MD 74.360.6 39.4

Male

(%)

99.9100.0100.097.7

100.097.299.994.798.4

100.099.097.699.399.799.3

100.099.599.099.8

100.0 7.6 7.3 10.8ME 53.6 46.4 100.0 4.9 10.2 23.4 61.5MI 78.5 21.5 98.2 36.9 20.8 13.6 26.9MN 46.1 99.6 17.7 20.7 27.6 33.5MO 61.1 38.9 99.1 21.9 13.5 41.0MS 56.0 44.0 100.0 14.1 20.3 50.9MT 65.9 98.4 18.6 8.5 3.9 67.4

53.922.6

14.634.1

41

Table 12B (continued)

Client Characteristics by State: Gender and Level of Retardation State Male Female

(%) Clients with

Mental Retardation

(MR; %)

Clients with Mild MR

(%) (%)

Clients with Severe MR

(%)

Clients with Profound MR

(%)

58.3 41.7 96.9 2.9 9.7 22.3ND 56.0 44.0 100.0 13.5 29.5 42.2NE 58.9 41.1 8.6 10.4 19.9 60.3NH 50.0 88.5 0.0 3.8 19.2 65.4NJ 54.8 45.2 99.0 7.3 7.6 68.7

NM 55.6 44.4 100.0 30.0 26.4 20.2NV 67.2 99.6 17.0 17.7 24.7 40.2

60.4 39.6 98.9 13.6 14.8 23.6OH 58.5 41.5 98.7 10.3 21.2 50.0OK 56.7 43.3 22.5 21.3 29.2 26.5OR 30.6 100.0 4.8 4.8 6.5 83.9PA 55.5 44.5 99.8 7.6 12.1 57.1RI 51.4 48.6 100.0 8.1 8.1 83.8SC 57.1 99.0 6.2 10.4 19.4 63.0

69.7 30.3 97.8 30.7 6.9 9.1TN 57.2 42.8 99.9 3.7 18.2 70.4TX 56.8 43.2 18.4 19.7 23.0 38.7UT 44.8 100.0 19.1 9.7 21.9 49.2VA 58.9 41.1 83.4 2.5 8.1 49.5VT 25.0 75.0 100.0 8.3 8.3 33.3WA 60.9 99.5 6.4 12.5 23.0 57.6

54.9 45.1 97.6 13.1 14.1 21.4WV 56.8 43.2 99.6 8.8 31.6 41.7WY 47.4 52.6 3.4 5.2 10.3 81.0U S 42 2 98 7 12 9 15 7 22 1 48 1

Clients with Moderate MR (%)

NC 62.114.8

99.2 50.0

15.423.5

32.8NY 46.9

17.299.5

69.422.9

0.042.9

SD 51.17.7

99.8 55.2

23.350.0

39.1WI 48.9

17.5100.0

57 8

42

Table 12C

Client Characteristics by State: Other Developmental Disabilities State Clients with Autism

(%) Clients with

Cerebral Palsy (%)

Clients with Epilepsy (total) (%)

Uncontrolled Epilepsy(%)

Controlled Epilepsy (%)

AL 3.5 11.0 36.4 3.9 32.5AR 5.3 30.9 45.2 10.7 34.5AZ 1.7 23.1 51.4 18.5 32.9CA 6.4 33.0 43.0 7.5 35.5CO 3.5 9.0 43.8 10.4 33.3CT 12.7 17.4 41.1 9.9 31.2DC 3.1 21.5 31.4 2.4 29.0DE 1.2 40.1 44.7 3.1FL 3.3 15.1 41.5 6.1 35.4GA 2.8 20.7 50.6 15.9 34.7HI 13.6 10.7 35.0 1.0 34.0IA 10.5 18.7 45.2 8.4 36.7ID 9.2 16.4 31.6 4.7 26.9IL 3.7 18.6 35.7 6.9 28.7IN 6.2 12.6 26.3 3.6 22.7KS 15.0 28.8 42.4 4.0 38.4KY 4.0 19.1 42.9 26.4 16.4LA 4.0 14.1 32.3 5.5 26.8MA 3.1 17.0 53.1 21.9 31.2MD 2.4 19.5 54.0 10.3 43.7ME 4.2 28.7 58.1 17.0 41.1MI 10.8 4.3 32.3 11.5 20.8MN 4.8 18.5 33.3 8.2 25.1MO 4.8 16.9 47.4 11.1 36.3MS 5.8 14.5 34.7 4.2 30.5MT 2.3 22.5 64.3 32.6 31.8

41.6

43

Table 12C (continued)

Client Characteristics by State: Other Developmental Disabilities State Clients with Autism

(%) Clients with

Cerebral Palsy (%)

Clients with Epilepsy (total) (%)

Uncontrolled Epilepsy(%)

Controlled Epilepsy (%)

NC 10.6 25.1 44.0 6.6 37.4ND 9.6 21.7 39.7 9.3 30.5NE 2.4 11.9 52.7 8.6 44.1NH 0.0 65.4 80.8 69.2 11.5NJ 5.4 36.1 49.0 22.1 26.9

NM 7.6 9.7 25.3 1.8 23.5NV 8.9 22.1 48.3 2.2 46.1NY 11.3 20.0 35.5 6.0 29.5OH 5.4 20.9 43.0 6.8 36.2OK 3.1 13.0 30.5 5.0 25.6OR 45.2 3.2 25.8 6.5 19.4PA 6.5 26.5 45.6 8.1 37.5RI 0.0 32.4 67.6 8.1 59.5SC 4.6 12.2 43.8 4.1 39.7SD 10.0 15.2 40.3 5.6 34.6TN 6.4 33.4 47.6 16.2 31.4TX 5.1 17.9 36.2 7.1 29.1UT 6.1 17.2 49.6 23.9 25.8VA 5.4 18.7 49.4 17.4 32.0VT 0.0 50.0 100.0 33.3 66.7WA 11.7 8.4 41.1 9.9 31.2WI 5.7 21.1 46.3 18.9 27.4WV 5.7 16.7 37.9 6.3 31.6WY 7.8 15.5 53.4 5.2 48.3U.S. 6.2 20.5 39.8 8.4 31.4

44

Table 12D

Client Characteristics by State: Physical and Sensory Disabilities State Non-

Ambulatory Clients

(%)

Non-Ambulatory and Mobile

(%)

Non- Ambulatory, Non-Mobile

(%)

Speech/ Language Impair-

ment (%)

Any Hearing Impairment

(%)

Hard of Hearing

(%)

Deaf (%)

Any Visual Impairment

(%)

Partially Visually Impaired

(%)

Blind (%)

AL 46.2 42.3 3.9 62.9 19.5 17.0 2.5 27.4 18.0 9.4AR 26.6 8.4 18.1 70.8 15.2 11.8 3.3 38.5 33.2 5.3AZ 63.0 10.4 52.6 93.6 23.1 21.4 1.7 56.1 45.1 11.0CA 62.2 38.5 23.6 58.9 14.4 11.1 3.3 38.0 26.5 11.5CO 95.8 50.0 45.8 78.5 22.9 14.6 8.3 26.4 9.0 17.4CT 72.1 54.0 18.0 57.8 13.0 9.1 3.9 27.6 20.3 7.3DC 44.0 26.4 17.6 47.2 16.3 13.1 3.1 36.0 26.8 9.2DE 43.8 22.4 21.4 68.0 18.0 16.1 1.9 38.5 26.1 12.4FL 66.6 44.2 22.4 64.0 11.0 7.7 3.3 31.0 21.2 9.7GA 74.3 65.5 8.7 58.7 10.8 6.2 4.6 41.8 35.9 5.9HI 58.3 49.5 8.7 56.3 15.5 10.7 4.9 32.0 24.3 7.8IA 54.0 38.6 15.3 66.1 14.9 12.6 2.3 37.2 30.6 6.5ID 75.2 60.0 15.2 63.7 13.6 9.1 4.5 32.1 25.3 6.8IL 64.9 45.8 19.1 29.1 12.7 9.7 3.0 34.5 27.5 7.0IN 62.9 58.3 4.6 38.8 14.3 12.5 1.8 44.4 40.9 3.6KS 25.1 23.2 1.8 62.2 10.4 9.6 0.8 30.8 26.4 4.4KY 53.4 40.0 13.3 60.9 19.9 16.6 3.3 37.0 28.9 8.1LA 51.0 35.5 15.4 61.5 17.7 14.6 3.1 41.4 35.6 5.8MA 75.0 45.0 30.0 30.9 20.7 17.6 3.1 37.4 24.8 12.6MD 52.5 18.3 34.2 68.7 25.2 21.0 4.2 31.5 19.0 12.5ME 92.8 53.2 39.6 67.5 16.6 15.1 1.5 41.1 31.3 9.8MI 14.0 6.8 7.2 44.8 3.2 1.1 2.2 13.3 7.9 5.4MN 37.5 26.5 11.0 52.9 16.2 13.6 2.6 43.5 37.1 6.3MO 32.1 17.7 14.5 55.2 15.6 13.8 1.8 33.0 25.4 7.6MS 40.3 26.8 13.5 44.5 12.1 9.4 2.8 25.1 18.4 6.7MT 82.2 53.5 28.7 71.3 7.0 7.0 0.0 12.4 1.6 10.9

45

Table 12D (continued)

Client Characteristics by State: Physical and Sensory Disabilities State Non-

Ambulatory Clients

(%)

Non-Ambulatory and Mobile

(%)

Non- Ambulatory, Non-Mobile

(%)

Speech/ Language Impair-

ment (%)

Any Hearing Impairment

(%)

Hard of Hearing

(%)

Deaf (%)

Any Visual Impairment

(%)

Partially Visually Impaired

(%)

Blind (%)

NC 34.6 18.0 16.6 63.4 13.9 11.2 2.7 40.8 30.8 10.0ND 38.9 17.3 21.7 74.4 11.6 9.3 2.3 31.8 23.9 7.8NE 42.4 18.2 24.2 74.3 15.9 12.6 3.3 44.9 34.2 10.7NH 88.5 23.1 65.4 96.2 7.7 3.8 3.8 92.3 80.8 11.5NJ 66.1 47.4 18.7 71.1 36.3 32.8 3.6 40.3 31.3 9.0

NM 53.8 45.1 8.7 44.4 9.4 6.9 2.5 38.3 31.0 7.2NV 32.8 27.3 5.5 61.6 9.2 4.1 5.2 30.6 20.7 10.0NY 66.0 50.6 15.4 46.0 18.4 15.5 2.9 30.4 23.2 7.2OH 41.1 22.6 18.5 56.3 19.3 17.0 2.3 47.3 39.3 7.9OK 64.5 49.4 15.1 37.3 10.2 8.1 2.1 33.3 28.4 4.9OR 19.4 11.3 8.1 93.5 11.3 6.5 4.8 30.6 25.8 4.8PA 49.8 27.2 22.6 72.9 12.9 10.4 2.4 36.0 26.2 9.8RI 89.2 21.6 67.6 75.7 32.4 29.7 2.7 62.2 18.9 43.2SC 62.4 45.6 16.8 40.3 10.9 8.9 2.0 29.4 21.2 8.2SD 30.3 10.4 19.9 8.2 25.1 22.1 3.0 14.7 11.3 3.5TN 51.1 27.8 23.2 86.3 15.8 12.3 3.5 42.5 30.5 12.0TX 25.4 14.6 10.8 58.1 15.3 12.6 2.6 48.8 40.8 8.0UT 41.8 22.7 19.1 18.5 16.7 13.1 3.6 44.4 35.8 8.5VA 67.6 45.1 22.5 59.7 16.9 10.5 6.4 35.3 24.9 10.3VT 100.0 41.7 58.3 100.0 8.3 8.3 0.0 41.7 41.7 0.0WA 20.5 14.4 6.1 65.0 19.7 17.2 2.5 45.4 37.5 7.9WI 64.1 41.7 22.5 48.2 24.8 21.8 2.9 38.6 31.0 7.6WV 89.4 77.4 12.0 58.3 11.0 8.6 2.4 39.1 29.5 9.6WY 47.4 47.4 0.0 87.1 8.6 6.9 1.7 43.1 25.9 17.2U.S. 51.8 34.9 16.8 54.2 15.9 13.0 2.9 38.5 30.5 8.0

46

Table 12E

Client Characteristics by State: Behavior Management Approaches and Other Characteristics

State Drugs toControl

Behavior (%)

Physically Restrained

(%)

Time Out Rooms

(%)

Noxious or Painful Stimuli

(%)

Medical Care Plans (%)

Court-Ordered Admissions

(%)

Over Age 18 with Legal Guardian

(%) AL 44.2 3.2 3.3 0.0 7.8 5.9 65.9AR 40.6 15.4 0.7 0.0 0.3 2.2 72.1AZ 17.3 0.0 0.0 0.0 22.5 0.0 89.0CA 32.2 5.3 1.5 0.1 35.7 14 18.0CO 50.7 9.0 0.0 0.0 71.5 17.4 76.4CT 30.4 10.7 0.1 0. 5.8 5.9 92.9DC 47.0 0.9 0.1 0.0 8.4 71.9 8.1DE 27.3 0.6 0.0 0.0 6.2 0.0 26.7FL 28.2 1.7 0.5 0.0 68.7 28.7 57.1GA 37.9 6.0 4.9 0.0 25.2 16.3 12.8HI 31.1 19.4 0.0 0.0 9.7 0.0 76.7IA 44.9 21 7.4 0.0 2.3 5.1 62.8ID 40.0 26.2 0.2 1.4 16.8 7.3 54.8IL 31.7 1.9 0.6 0.1 22.6 1.5 79.7IN 44.6 8.2 0.1 0.0 25.3 12 31.4KS 29.8 11 0.5 0.0 1.6 1.1 88.4KY 32.5 12.2 0.3 0.2 2.8 61.8 95.0LA 34.2 4.4 0.5 0.0 32.6 4.6 18.1MA 39.3 8.4 3.3 0.0 7.7 0.0 79.0MD 5.2 26.1 0.0 0.0 9.3 5.4 6.1ME 23.8 28.7 0.0 0.0 67.5 3.8 92.8MI 26.9 18.3 0.0 0.0 6.5 9.3 96.1MN 34.4 3.4 0.9 0.0 17.9 3.3 83.9MO 54.2 22.5 0.3 0.0 17.3 11.6 80.6MS 24.4 5.7 1.2 0.0 0.2 0.4 24.9MT 49.6 18.6 0.0 0.0 0.0 97.7 37.2

47

Table 12E (continued)

Client Characteristics by State: Behavior Management Approaches and Other Characteristics

State Drugs toControl

Behavior

(%)

Physically Restrained

(%)

Time Out Rooms

(%)

Noxious or Painful Stimuli

(%)

Medical Care Plans (%)

Court-Ordered Admissions

(%)

Over Age 18 with Legal Guardian

(%) NC 32.1 6.5 1.8 0.0 4.7 0.6 87.0ND 35.3 16.8 3.1 0.0 7.5 0.8 85.0NE 32.3 24.0 0.0 0.0 22.3 0.5 96.7NH 3.8 0.0 0.0 0.0 100.0 0.0 0.0NJ 17.3 10.8 0.0 0.0 54.3 0.8 74.8

NM 27.1 35.0 0.4 0.0 0.0 2.5 60.3NV 58.3 15.5 1.5 0.0 51.7 0.4 83.8NY 47.0 23.4 2.8 0.2 20.9 1.3 14.8OH 38.8 7.4 0.7 0.1 15.6 6.4 72.4OK 34.4 4.8 0.5 0.0 5.7 2.0 36.6OR 59.7 21.0 0.0 0.0 0.0 100.0 9.7PA 31.7 4.2 0.2 0.0 4.0 8.5 17.0RI 5.4 2.7 0.0 0.0 67.6 2.7 18.9SC 34.5 3.1 0.0 0.4 16.3 2.5 1.3SD 23.4 69.3 10.4 0.0 100.0 5.2 85.3TN 19.6 6.5 0.1 0.0 40.0 1.2 80.9TX 36.1 7.8 0.2 0.1 6.9 28.0 32.9UT 39.9 1.9 0.0 0.0 11.2 12.0 38.9VA 38.2 4.6 2.0 0.0 43.6 0.0 17.4VT 16.7 8.3 0.0 0.0 91.7 0.0 100.0WA 42.1 12.4 0.0 0.0 21.8 9.7 77.2WI 43.3 15.7 3.1 0.0 59.2 79.7 95.1WV 38.3 2.9 0.0 0.0 29.5 0.0 56.2WY 33.6 1.7 0.0 0.0 1.7 2.6 57.8U.S. 36 8.6 1.1 0.1 21.2 11.6 48.1

48

Mental Retardation and Other Developmental Disabilities In only three states did fewer than 95% of clients have some level of retardation (Table 12B). These were Delaware (94.7%), New Hampshire (88.5%), and Virginia (83.4%). The majority of ICF/MR clients in each state had severe or profound levels of MR. Exceptions included Indiana (56% had mild or moderate MR), New Mexico (54% of clients had mild or moderate MR), and Vermont (58% had mild or moderate MR). ICFs/MR in New Hampshire and Rhode Island did not serve any clients with only mild MR. Across the country, 6.2% of people living in ICFs/MR were diagnosed with autism (Table 12C). This proportion varied across states, ranging from three states with no clients with such a diagnosis (New Hampshire, Rhode Island, Vermont) to 45% of clients with such a diagnosis in Oregon. About one-fifth of ICF/MR clients nationwide had cerebral palsy (Table 12C). This rate was much higher in New Hampshire, where almost two-thirds of clients in its only facility had cerebral palsy, and in Vermont where half of all clients had cerebral palsy. Again, the small number of facilities in these states suggests they may be specializing, or targeting their services to particular populations. The prevalence of cerebral palsy among ICF/MR clients was much lower elsewhere, with fewer than 10 percent of clients having cerebral palsy in Colorado, Michigan, New Mexico, Oregon, and Washington. Epilepsy was relatively common among ICF/MR clients, with about two of every five (39.8%) clients having such a diagnosis (Table 12C). All of the ICF/MR clients in Vermont and four-fifths of the clients in New Hampshire had epilepsy. Prevalence of epilepsy was lowest in New Mexico and Oregon where approximately one-quarter of clients had such a diagnosis. The majority of clients with epilepsy had their seizures controlled with medication. This was true in all states except Kentucky, Montana, and New Hampshire. The prevalence of uncontrolled epilepsy was especially great (69.2%) in New Hampshire’s sole facility. Physical and Sensory Disabilities Table 12D shows the occurrence of various physical and sensory disabilities among ICF/MR clients by state. Across the country, about half of all ICF/MR clients were non-ambulatory. Notable exceptions were found in Michigan (14.0%) and Oregon (19.4%) at the low end, and in Colorado (95.8%), Maine (92.8%) and Vermont (100%) at the high end. Most non-ambulatory people had some method for achieving mobility. This was true of all clients in Wyoming. The proportions who were non-ambulatory and non-mobile exceeded those who were non-ambulatory and mobile in only ten states. The most extreme cases were found in Arizona, New Hampshire, and Rhode Island (52.6% vs. 10.4%; 65.4% vs. 23.1%; and 67.6% vs. 21.6%, non-ambulatory/non-mobile vs. non-ambulatory/mobile, respectively). Over half of all ICF/MR clients had some speech/language impairment. This was true for all clients in Vermont, and for nearly all clients in New Hampshire (96.2%) and Oregon (93.5%). However, it was true for only 8.2% of clients in South Dakota.

49

About one in every six (15.9) clients had either partial or total hearing loss; for most of those clients, the loss was partial. Although there was variation among states, typically fewer than one in four clients had any level of hearing loss. Exceptions were found in New Jersey (36.3%) and Rhode Island (32.4%), where about one in three clients had hearing loss. Neither Montana nor Vermont served any deaf ICF/MR clients. Deafness was more prevalent than was partial hearing loss among clients in Michigan and Nevada, and was equally prevalent among clients in New Hampshire. Nationally, 38.5% of ICF/MR clients had either partial or total vision loss. In most states, fewer than half of all clients had any vision loss. New Hampshire was unique, in that over 90% of its clients had some level of vision loss. Arizona and Rhode Island also had higher than average proportions of clients with vision loss. In most states, the majority of people with vision loss had some sight. The reverse was true (i.e., most people with vision loss were blind) in Colorado, Montana, and Rhode Island. None of Vermont’s 12 clients were blind. Special Care Needs Table 12E provides information about the prevalence of special care needs among clients in each state. Such care needs include approaches to managing behaviors (medications, physical restraints, time-out rooms, painful or noxious stimuli), and medical care needs. The most commonly used of these behavior management approaches was pharmacological. Over one-third of all clients received drugs to help control behaviors. This was true for more than half of all clients in Colorado, Missouri, Nevada, Oregon, and South Dakota, but for fewer than 10% of clients in New Hampshire and Rhode Island. Nationally, fewer than 10% of ICF/MR clients were physically restrained. Physical restraints were used most widely among clients in Iowa, Idaho, Maine, Missouri, Nebraska, New York, Oregon, and South Dakota. They were not used at all among clients in Arizona or New Hampshire. These data must be interpreted with caution, as there is some ambiguity as to what constitutes a physical restraint. By regulation, the same item may be considered a restraint or not, depending on its purpose. Differences across states may reflect different interpretations of restraints, as well as true differences in usage. Time-out rooms were used as part of care plans for only 1.1% of clients in the U.S. There were several states in which they were not used at all. These included Arizona, Colorado, Delaware, Hawaii, Maryland, Maine, Michigan, Montana, Nebraska, New Hampshire, New Jersey, New Mexico, Oregon, Rhode Island, South Carolina, Utah, Vermont, Washington, West Virginia, and Wyoming. Time-out rooms were used in Iowa for 7.4% of clients and in South Dakota for over 10% of clients. Noxious and painful stimuli were the least often used approach to behavior management, being received by only 0.1% of all clients nationally. Most states did not use this

50

approach at all. It was used only in California, Idaho, Illinois, Kentucky, New York, Ohio, South Carolina, and Texas. Of those, only Idaho used such stimuli for more than one percent of its clients. Nationally, about one of every five clients had a medical care plan. There was tremendous variation among states in the extent to which this was true. All clients in New Hampshire and South Dakota had medical care plans, whereas none of the clients in Montana or Oregon had such plans. Each of these four states had few facilities (only 1 in New Hampshire and Oregon, 2 in South Dakota and 4 in Montana). Possible explanations for these extreme rates of medical care plans, either high or low, include differences in care philosophies, availability of alternative care facilities (or lack thereof), or unique state requirements. Other Client Characteristics All ICF/MR clients in Oregon had court-ordered admissions (Table 12E). There were eight states with no such admissions. In most other states, the proportion of clients with court-ordered admissions was well below twenty percent, with a few exceptions. The proportion of clients over age 18 with legally appointed guardians also varied widely across states. New Hampshire did not have any such clients, because its sole ICF/MR only served children. Even excluding New Hampshire, the proportion of such clients varied widely from 1.3% (South Carolina) to 100% (Vermont).

4.3 Characteristics by Facility Size Facility Characteristics Table 13 shows key facility characteristics grouped by bed size. Very small (4-8 beds) and very large (151 or more beds) facilities represented the two largest groups, in terms of total number of beds. The distribution of clients across bed size groups closely paralleled the distribution of total beds, with a slightly greater proportion of clients served in very small facilities and a slightly smaller proportion of clients served by very large facilities than the comparable proportions of beds. This reflected the lower occupancy rates in larger facilities than in smaller ones. The relationships between number of employees and number of clients did not vary directly with bed size. The ratio of clients to direct care staff was lowest among the smallest facilities, and largest among mid-size facilities (51-100 beds). There was little variation in the number of RNs and LPNs per client across bed sizes. Table 14 shows deficiency data by bed size. Larger facilities had greater numbers of deficiencies cited than did small ones. Facilities with 4 to 8 beds had an average of 2.6 deficiencies cited, while the largest facilities had an average of 6.0 deficiencies cited. In keeping with this, the percent of facilities in which no deficiencies were cited was greatest for small facilities and decreased as facility size increased. The likelihood that a

51

facility had a condition of participation cited also increased dramatically with bed size, from 3.4% of the smallest facilities to 15.6% of the largest. The two smallest facility size groups were less likely than the others to have deficiencies cited for client rights, abuse, physical restraints, personal skills training, active treatment plan implementation, and protection of rights. The patterns were less clear for other specific deficiencies. Client Characteristics Table 15 shows the distribution of client characteristics by bed size. There were no apparent relationships between age or gender distributions and bed size. Larger facilities appeared to serve a population with more severe levels of retardation. Facilities with 16 or fewer beds differed from those with 17 or more beds, in that the former were less likely to serve clients with cerebral palsy or epilepsy, more likely to serve clients who were autistic, who were non-ambulatory but mobile, less likely to serve clients who were non-ambulatory and non-mobile, less likely to serve clients who were blind, but more likely to serve clients with visual impairment. Smaller facilities also were more likely to use drugs to control behaviors and to use painful or noxious stimuli, and less likely to serve clients who had court-ordered admissions. 4.4 Characteristics by Ownership Facility Characteristics Table 16 presents information on key facility characteristics by ownership status. Data are shown for all privately owned facilities and separately for private for-profit facilities and private not-for-profit facilities. Data also are shown for all publicly owned facilities, and separately for those facilities by whether they are owned by the state or by other public entities. While the number of facilities owned by states was comparable to the number owned by other public entities, state-owned facilities were much larger. The figures for all publicly owned facilities, which represent a weighted average of all publicly owned facilities, are therefore more heavily influenced state facilities. This effect is seen in comparisons of publicly owned and privately owned ICFs/MR. As noted in the following paragraphs, differences among these two types of facilities are often due to the impact of state owned facilities; ICFs/MR owned by other public entities often appear more similar to private facilities than to state owned ICFs/MR. Publicly owned facilities were, on average, much larger than those that were privately owned. This reflected the large size of state-owned facilities. ICFs/MR owned by other public entities were comparable in size to those that were privately owned. Occupancy rates in publicly owned facilities were lower than those in privately owned facilities.

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Table 13

Facility Characteristics by Bed Size: Ownership, Size and Staffing

Bed Size 4-8 9-16 17-50 51-100 101-150 >150 All

FacilitiesFacilities (#) 4,685 1,184 334 181 85 122 6,591

Ownership 4,164 1,020 185 120 46 16 5551

For-profit (#) 2,064 175 58 59 26 7 2389Not-for-profit (#) 2,100 845 127 61 20 9 3162

Publicly Owned (#) 521 164 149 61 39 106 1040State-Owned (#) 127 91 111 48 35 105 517Other Public (#) 394 73 38 13 4 1 523

Facility Size 29,648 14,887 10,144 12,959 10,533 48,279 126,450

Percent of Total Beds (%) 23.4 11.8 8.0 10.2 8.3 38.2 100.0Clients (#) 28,784 14,591 9804 12,091 9332 36,930 111,532Percent of Total Clients (%)

25.8 13.1 8.8 10.8 8.4 33.1 100.0

Occupancy Rate (%) 97.1 98.0 96.6 93.3 88.6 76.5 88.2Staffing*

Total Employees(FTEs) 42,987 19,249 17,390 16,263 13,406 68,769 178,064Employees per Facility (FTEs)

9.3 16.3 53.0 90.4 157.7 568.3 27.4


34,263 14,568 10,564 10,958 8933 40,806 120,092

Direct Care Staff per Facility (FTEs)

7.42 12.37 32.21 60.19 105.09 337.24 18.45

Clients-to-Direct Care Staff Ratio (#)

0.83 1.00 0.91 1.10 1.04 0.90 0.92

RNs per Client (FTEs) 0.05 0.04 0.08 0.05 0.06 0.07 0.06LPNs per Client (FTEs) 0.07 0.05 0.11 0.09 0.08 0.07 0.08

*N=6509 due to data cleaning

Privately Owned (#)

Beds (#)

This again reflected the impact of state-owned facilities on the average of all publicly owned facilities. When the two types of public owned facilities are considered separately, ICFs/MR owned by other public entities were more similar to privately owned facilities than to state owned facilities. Staffing differences among the four types of ownership were relatively small, although state facilities had the fewest clients per direct care staff. This may reflect appropriate staffing levels, given that state facilities tended to serve clients with greater levels of need for assistance.

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Table 14 Facility Characteristics by Bed Size: Deficiencies

Bed Size 4-8 9-16 17-50 51-100 101-150 >150 All

FacilitiesAverage Health Deficiencies per Facility (#)

2.6 2.3 3.6 4.4 5.5 6.0 2.7

Percent of Facilities with Conditions of Participation Cited

3.4 2.1 7.5 9.9 12.9 15.6 3.9

Percent of Facilities with No Deficiencies

37.7 34.1 27.2 26.0 17.6 17.2 35.6

Percent of Facilities with Clients Rights Cited (W125)

1.4 0.9 1.8 5.0 4.7 3.3 1.5

Percent of Facilities with Freedom from Abuse Cited (W127)

0.9 0.3 1.5 2.8 5.9 8.2 1.1

Percent of Facilities with Freedom from Restraint Cited (W128)

1.2 0.9 2.1 3.3 8.2 4.9 1.4

Percent of Facilities with Personal Privacy Cited (W129)

0.8 0.8 1.8 1.7 3.5 1.6 1.0

Percent of Facilities with Freedom of Association Cited (W133)

0.0 0.1 0.9 0.0 0.0 0.0 0.1

Percent of Facilities with Personal Skills Training Cited (W242)

5.3 5.8 9.6 7.7 12.9 7.4 5.8

Percent of Facilities with Active Treatment Plan Cited (W249)

19.7 21.8 26.6 33.1 47.1 36.9 21.4

Percent of Facilities with Protection of Rights Cited (W285)

1.0 0.8 2.1 5.5 3.5 5.7 1.3

Percent of Facilities with Health Care Cited (W322)

6.4 10.3 7.5 4.4 9.4 10.7 7.2

Percent of Facilities with Nutrition Cited (W460)

14.8 12.8 12.3 23.2 16.5 21.3 14.7

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Table 15 Client Characteristics by Bed Size

Bed Size

4-8 9-16 17-50 51-100 101-150 >150 All Facilities

Demographics

Clients (#) 28,784 14,591 9,804 12,091 9,332 36,930 111,532

0 – 22 Years (%) 11.0 5.6 15.1 12.2 11.6 5.3 9.0

22 – 45 Years (%) 56.9 56.0 48.4 53.2 49.1 56.4 54.8

46 – 65 Years (%) 27.7 30.8 27.4 27.8 31.4 31.6 29.7

65 Years or Older (%) 4.3 7.7 9.1 6.8 8.0 6.7 6.5

Male (%) 57.2 55.9 56.2 56.6 58.4 59.7 57.8

Female (%) 42.8 44.1 43.8 43.4 41.6 40.3 42.2

Disability Status

Clients with MR (%) 98.9 99.1 98.7 98.6 97.5 98.8 98.7

Mild MR (%) 18.4 15.0 10.0 12.7 10.0 9.4 12.9

Moderate MR (%) 22.0 22.7 14.6 14.1 12.1 9.7 15.7

Severe MR (%) 26.0 27.0 21.0 21.5 21.2 17.8 22.1

Profound MR (%) 32.6 34.4 53.2 50.2 54.3 61.9 48.1Clients who are Autistic (%) 7.3 7.7 6.1 4.5 4.5 5.8 6.2

Clients with Cerebral Palsy (%) 18.1 17.2 23.9 23.9 21.6 21.4 20.5

Clients who have Epilepsy (%) 32.2 31.7 44.5 42.5 44.1 45.6 39.8

Uncontrolled Epilepsy (%) 4.5 5.7 9.2 8.4 8.8 12.1 8.4

Controlled Epilepsy (%) 27.7 26.0 35.3 34.1 35.3 33.5 31.4

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Table 15 (continued) Client Characteristics by Bed Size

Bed Size

4-8 9-16 17-50 51-100 101-150 >150 All Facilities

Physical Function

Clients who are Non-Ambulatory (%) 51.5 56.3 58.6 56.5 59.0 44.9 51.8

Non-Ambulatory, Mobile (%) 41.2 47.1 31.2 33.6 35.6 26.6 34.9

Non-Ambulatory, Non-Mobile (%) 10.4 9.2 27.4 22.9 23.4 18.4 16.8

Speech/Language Impairment (%) 47.9 40.3 56.8 48.8 55.4 65.3 54.2

Any Hearing Impairment (%) 13.0 16.1 16.8 13.4 14.5 19.1 15.9

Hard of Hearing (%) 10.5 13.6 14.2 11.0 11.7 15.5 13.0

Deaf (%) 2.5 2.5 2.6 2.4 2.7 3.6 2.9Any Visual Impairment (%) 42.1 38.4 40.9 36.9 37.5 35.9 38.5

Visually Impaired (%) 36.2 32.8 31.8 28.6 28.9 25.7 30.5

Blind (%) 5.9 5.6 9.1 8.3 8.6 10.1 8.0

Behavior Management and Other Characteristics Drugs to Control Behavior (%) 39.0 38.9 32.2 34.3 32.5 34.9 36.0

Physically Restrained (%) 5.8 12.5 9.8 6.8 5.3 10.4 8.6

Time Out Rooms (%) 0.6 1.0 1.8 0.9 1.3 1.4 1.1Noxious or Painful Stimuli (%) 0.2 0.1 0.1 0.0 0.0 0.0 0.1

Medical Care Plans (%) 16.8 16.3 30.6 33.5 26.4 18.7 21.2

Court-Ordered Admissions (%) 3.8 2.7 12.7 11.7 12.9 20.5 11.6

Over Age 18 with Legal Guardian (%) 34.7 48.1 62.1 54.2 43.7 54.0 48.1

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Table 16 Facility Characteristics by Type of Ownership: Size and Staffing

All Privately Owned

For-profit

Not-for profit

All Publicly Owned

State Owned

Other Public

Entities

All Facilities

Facility Size Facilities (#) 5,551 2,389 3,162 1,040 517 523 6,591Beds (#) 62,400 25,813 36,587 64,050 57,490 6,560 126,450Beds per Facility (#) 11.3 10.8 11.6 61.6 111.2 12.5 19.2Median Beds per Facility (#) 6 6 8 9 24 6 6Clients (#) 60,272 24,627 35,645 51,260 45,151 6,109 111,532Clients per Facility (#) 10.9 10.3 11.3 49.3 87.3 11.7 16.9Median Clients per Facility (#)

6 6 7 8 23 6 6

Occupancy Rate (%) 96.6 95.4 97.4 80.0 78.5 93.1 88.2Staffing*

Total Employees (FTEs) 83,647 29,266 54,381 94,417 86,275 8,142 178,064Direct Care Staff (FTEs) 61,361 22,376 38,985 58,732 52,614 6,118 120,092Employees per Facility (FTEs)

15.3 12.5 17.3 91.5 168.5 15.7 27.4

Client-to-Direct Care Staff (#)

0.97 1.08 0.91 0.87 0.86 1.00 0.92

Median Client-to-Direct Care Staff (#)

0.9 0.96 0.85 0.89 0.83 0.95 0.89

RNs per Client (FTEs) 0.05 0.04 0.06 0.07 0.07 0.05 0.06LPNs per Client (FTEs) 0.07 0.07 0.08 0.08 0.08 0.07 0.08

* N = 6509 facilities due to data cleaning

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Figure 3Comparison Between Percent of Facilities and Percent of Clients by Ownership

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

For-Profit Non-Profit State Other Public

Percent of Facilities

Percent of Clients

Figure 3 shows the percent of facilities owned and percent of clients served by each of the four ownership types. State owned facilities accounted for only 8% of facilities, but served 40% of all clients. By contrast, the two groups of privately owned facilities accounted for larger proportions of facilities than they did clients served. These distributions illustrate the relative sizes of the facilities.

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Table 17 Facility Characteristics by Ownership: Deficiencies

Total Privately Owned

For-profit Not-for profit

Total Publicly Owned

State Other All Facilities

Health Deficiencies Cited (#)

14,829 7,170 7,659 3,236 1,713 1,523 18,065

Health Deficiencies Cited per Facility (#)

2.7 3.0 2.4 3.1 3.3 2.9 2.7

Facilities with Conditions

3.6 3.7 3.4 5.8 7.2 4.4 3.9

Facilities with No Deficiencies (%)

35.7 35.4 35.9 35.1 33.3 36.9 35.6

Clients Rights (W125; %)

1.4 2.0 1.0 1.8 2.5 1.1 1.5


0.9 1.1 0.7 2.0 2.9 1.1 1.1

Freedom from Restraint Cited (W128; %)

1.4 1.6 1.2 1.5 1.9 1.1 1.4

Personal Privacy Cited (W129; %)

0.9 1.0 0.9 1.1 1.4 0.8 1.0

Freedom of Association Cited (W133; %)

0.1 0.0 0.1 0.2 0.4 0.0 0.1

Personal Skills Training Cited (W242; %)

5.9 5.6 6.1 5.3 5.6 5.0 5.8

Active Treatment Plan Cited (W249; %)

21.0 20.2 21.7 23.6 23.6 23.5 21.4

Protection of Rights Cited (W285; %)

1.1 1.3 0.9 2.1 2.9 1.3 1.3

Health Care Cited (W322; %)

7.5 7.5 7.4 5.8 5.8 5.7 7.2

Nutrition Cited (W460; %)

3.4 4.5 2.6 3.3 2.7 3.8 3.4

of Participation Cited (%)

Table 17 presents information on deficiencies by ownership status. Publicly and privately owned facilities were equally likely to have any deficiencies cited; 35.1% and 35.7%, respectively had no deficiencies cited, and both types had similar numbers of health deficiencies cited overall (3.1 and 2.7, respectively). Conditions of participation were cited more often in state-owned facilities (7.2%) than in other publicly owned facilities (4.4%), and least often in privately owned facilities (3.6% overall). There were no distinct patterns across ownership type in the frequency with which specific deficiencies were cited.

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Client Characteristics Table 18 presents client characteristics by type of facility ownership. Publicly owned facilities served a slightly older population. A smaller percentage of clients in publicly owned facilities than in privately owned facilities were younger than 22 years. A greater proportion of clients in publicly owned facilities were male than was the case in privately owned facilities. The level of retardation varied by type of ownership. Greater proportions of clients in state-owned facilities had severe or profound levels of retardation than did clients in the other three ownership groups. A greater proportion of clients in state owned facilities had epilepsy than did clients in other ownership groups, but a slightly lower proportion of clients in state facilities had cerebral palsy than did clients in privately owned facilities. There was a greater prevalence of non-ambulatory clients among privately owned facilities, but slightly greater proportion of clients in state-owned facilities were both non-ambulatory and non-mobile. The proportion of clients with communication-related disabilities (speech, hearing) was greater in state owned than in privately owned facilities. Other publicly owned facilities were similar to the privately owned facilities in terms of the proportion of clients with communication disabilities. Greater proportions of clients in privately owned facilities and other public facilities had visual impairments than was the case in state owned facilities. However, state-owned facilities served greater proportions of clients who were blind. The use of drugs and time-out rooms to control behavior was more prevalent in publicly owned than in privately owned facilities. There was no clear relationship between ownership and the use of physical restraints, or the use of noxious and painful stimuli. The proportions of clients with medical care plans were similar across facility types. Clients with court-ordered admissions, and who have legally appointed guardians when over age 18 were both more prevalent in publicly owned than privately owned facilities.

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Table 18

Client Characteristics by Type of Ownership Total

Privately Owned

For-profit

Not-for profit



Demographics Clients (#) 60,272 24,627 35,645 51,260 45,151 6109 111,5320 – 22 Years (%) 12.1 12.6 11.7 5.3 4.7 9.3 9.022 – 45 Years (%) 53.5 51.0 55.2 56.4 56.5 55.5 54.846 – 65 Years (%) 28.2 29.7 27.1 31.5 32.0 27.7 29.765+ Years (%) 6.3 6.7 6.0 6.9 6.8 7.5 6.5Male (%) 55.9 56.1 55.8 60.0 60.3 57.7 57.8Female (%) 44.1 43.9 44.2 40.0 39.7 42.3 42.2

Disability Status Clients with Mental Retardation (%)

98.6 99.0 98.3 98.9 98.9 99.1 98.7

Mild MR (%) 14.9 17.3 13.2 10.6 9.8 16.6 12.9 Moderate MR (%) 19.5 20.2 19.0 11.1 9.9 20.4 15.7 Severe MR (%) 25.2 24.1 26.0 18.4 17.5 25.6 22.1 Profound MR (%) 39.0 37.5 40.0 58.8 61.8 36.5 48.1

Autistic Clients (%) 6.2 4.4 7.4 6.2 6.3 5.8 6.2 Cerebral Palsy (%) 21.3 20.3 22.0 19.5 19.9 17.0 20.5 Epilepsy (%) 35.7 35.4 35.8 44.6 46.0 34.6 39.8

Uncontrolled (%) 6.5 5.9 7.0 10.5 11.0 7.0 8.4 Controlled (%) 29.1 29.5 28.8 34.1 34.9 27.6 31.4

Physical Function Clients who are Non-Ambulatory (%)

55.5 52.9 57.3 47.4 47.4 47.3 51.8

Non-Ambulatory, Mobile (%)

39.6 36.7 41.6 29.5 29.1 32.7 34.9

Non-Ambulatory, Non-Mobile (%)

15.9 16.2 15.7 17.9 18.3 14.7 16.8

Speech/Language Impairment (%)

47.6 44.0 50.0 62.0 63.7 49.5 54.2

Any Hearing Impairment (%)

14.0 13.4 14.4 18.2 18.9 13.2 15.9

Partial loss (%) 11.6 11.1 12.0 14.7 15.2 11.0 13.0 Deaf (%) 2.4 2.3 2.4 3.5 3.6 2.2 2.9

Any Visual Impairment (%)

40.5 42.1 39.4 36.2 35.5 41.3 38.5

Visually Impaired (%)

34.0 35.7 32.8 26.4 25.3 33.9 30.5

Blind (%) 6.5 6.3 6.7 9.8 10.1 7.3 8.0

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Table 18 (continued)

Client Characteristics by Type of Ownership Total

Privately Owned

For-profit

Not-for profit



Behavior Management and Other Characteristics Drugs Control Behavior (%)

34.9 35.6 34.4 37.2 37.1 38.0 36.0

Physically Restrained (%)

7.8 4.7 9.9 9.6 9.9 7.8 8.6

Time Out Rooms (%) 0.7 0.3 1.0 1.6 1.5 2.3 1.1 Noxious/Painful Stimuli (%)

0.1 0.1 0.1 0.0 0.0 0.0 0.1

Medical Care Plan (%) 20.9 21.3 20.7 21.5 21.3 23.2 21.2 Court-Ordered Admissions (%)

3.8 4.7 3.2 20.8 21.5 15.9 11.6

Over Age 18 with Legal Guardian (%)

41.9 36.8 45.4 55.4 56.1 50.3 48.1

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Chapter 5

Discussion and Conclusions

5.1 Discussion Overview of Findings The study reported here used a national source of information, the OSCAR system, to describe the nation’s supply of ICFs/MR. Facilities were described in terms of size, ownership, staffing, and deficiencies. Clients were described in terms of demographics, disabilities, physical function, approaches to behavior management, and other issues related to legal status. We examined the data at several levels of aggregation. The primary lesson to be learned from these analyses is that “variation was the name of the game.” Facilities differed in size, ownership, and the types of clients served. Variation at the state level was particularly noteworthy. The number of ICFs/MR operating in any state ranged from 1015 in California to none in Alaska, and only one each in New Hampshire and Oregon. There was variation by state in the average size of facilities, the distribution of facilities across ownership types, and the characteristics of clients served. Areas of least variation were staffing and the proportion of clients who had mental retardation. These are the areas that are affected most by federal regulation. Minimum staffing guidelines, and regulations about the types of client needs that may be served by ICFs/MR offer some control of these items. Nonetheless, there was variation here as well. State variation in staffing levels may reflect local labor market conditions as well as differences in the mix of clients served. Variation among the type of client needs (i.e., “case mix”) served is particularly interesting, as it may reflect state differences in the types of waiver services available and the eligibility and screening practices of the states. As more options are available to individuals, either through waiver programs or by other methods, there may be shifts in the characteristics of people who obtain services in ICFs/MR. Further study of the relationships between state policies, waiver service availability, and ICFs/MR would be useful. Generally, ICFs/MR were small. As noted below, the average size decreased over time. However, there were some very large facilities, primarily owned by states. Although larger, state-owned facilities tended to serve clients with more severe levels of disability, there were small facilities serving similarly complex clients. Few differences were seen between facilities with 4-8 and those with 9-16 beds; facilities with 100-150 and more than 150 beds also appeared to be quite similar along the client characteristics studied.

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Differences by ownership also were observed. Differences between public and private facilities typically were driven by state-owned facilities. Facilities owned by other public entities often were more similar to private facilities than they were to state-owned ICFs/MR. State-owned facilities tended to be larger, serve more severely disabled clients, and have slightly higher staffing levels. The variations observed suggest that individual facilities may be developing areas of specialization. In states with few facilities in operation, it was apparent that individual facilities were serving special populations. For example, the single facility in New Hampshire served only clients who were under age 22, many of whom had cerebral palsy, uncontrolled epilepsy, were non-ambulatory, and required medical care plans. In states with larger numbers of ICFs/MR, it was not possible to determine from the aggregate data presented whether individual facilities were specializing. Specialized facilities could result from state policies about eligibility for services and the availability of alternatives, or from facility-level determinations of how best to position themselves in their market areas. Further study could determine the extent to which specialization truly is occurring, whether either of these hypothesized relationships exist, and could identify any other factors that are at work. Changes Over Time The data presented in this report provide a point-in-time view of ICFs/MR and the clients they served. Comparisons across states, ownership types, and facility sizes offer useful ways of understanding the situation in 1999, and suggest questions for future study. A study of OSCAR data from 1992 (Larson and Lakin, 1995) provides an opportunity to identify changes over time. The number of facilities reported in 1999 was slightly greater than the number reported by Larson and Lakin. These differences most likely result from the different processes used in data cleaning, in particular Larson and Lakin’s combining of co-located units (“cottages”) with separate provider numbers into single facilities, although we note that some states have experienced a true increase in facilities, as they close larger ICFs/MR and replace them with multiple smaller facilities. While our numbers cannot be compared directly, nonetheless there were some noteworthy changes over this period.

There was tremendous variation among states in the numbers of facilities operated and clients served, with much volatility over time. Michigan, which was the fifth largest state with 438 ICFs/MR in 1992, was one of the smallest states in 1999 with only 2 ICFs/MR operating. Other states with sizable decreases in the number of ICFs/MR include Delaware (decrease from 11 to 2), Massachusetts (77 to 7), North Carolina (330 to 255), South Dakota (15 to 4), New Hampshire (8 to 1), New York (1083 to 737), Rhode Island (69 to 4), and Alaska (6 to 0)4.

4 Although there were also cases of sizeable increases in the numbers of facilities operated in a state from 1992 to 1999, the different approaches to data cleaning mean that we cannot be certain whether the observed changes are artifactual or true increases. We can conclude only that there was volatility in the number of facilities in states across this time period.

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The average facility size appears to have decreased. Our study found an average facility size of 16.9 clients, down considerably from the 1992 average of 22.5 clients per facility. Again, however, some of this reduction may be an artifact of the differences in the ways that facilities were defined in the two studies.

There was an increase over time in the total employees per client, with a proportional increase in direct care staff per client. Federal law regulates minimum staffing levels, based on the number of clients and some key client characteristics. Regardless of these regulations, there may be a minimal number of staff needed to operate an ICF/MR. If so, decreases in the number of clients served would not necessarily result in proportional decreases in staffing; this would cause the ratio of staff to clients to increase. Thus, the increased staffing ratios over this period could reflect a decrease in clients with no change in staffing, or could represent an active attempt to increase staffing levels. Further study is required in order to determine the reason for the observed staffing changes over this period. This also raises the question of what the necessary staffing level is to ensure adequate, and preferably high, quality outcomes for clients. The relationship between levels and types of staff on the one hand, and client characteristics, needs, and outcomes on the other is an area deserving of further study.

There were some changes in the types of client needs served. The proportions of clients age 46 and older increased over this period, as did the proportions of clients with mild or moderate retardation. One possibility is that more people with severe or profound levels of mental retardation are being served in community-based settings. The proportion of clients with other developmental disabilities increased slightly over this period, with the greatest increase occurring in the proportion of clients with autism. Although we are unable to identify individuals with multiple disabilities from these data, it could be that ICFs/MR are targeting their services to people with complex needs, so that they are serving people with lower levels of retardation but with the added complications of other disabilities. This explanation, if correct, would explain the observed changes in client characteristics. It is an interesting area for further study.

There were no clear trends in the use of approaches to behavior management. The use of medications increased, while the use of physical restraints decreased very slightly. The use of time-out rooms decreased, but even in 1992 fewer than two percent of all clients were treated with time-out rooms. It may be that new medications for managing behaviors were adopted during this time period, replacing other, more physical approaches to behavior management. If so, one would need to ask whether this represents an improvement in an individual’s quality of life. It also is possible that there were other behavior management techniques adopted that were not reflected in the data, but that affected the frequency of use of the reported techniques.

Comparisons across time in trends by bed size show that the percentage of clients being served by larger facilities decreased from approximately 72.2% of all clients in 1992 to 60.9% of all clients in 1999. With one notable exception (the

65

use of physical restraints), bed size did not appear to be related to the changing characteristics of clients. However, there was a 35% increase in the likelihood of being physically restrained for clients in smaller facilities (16 beds or less), and a 19% decrease in that likelihood for clients in larger facilities.

The likelihood of being physically restrained also varied over time by ownership. There was a slight increase in the use of physical restraints among privately owned facilities, and a decrease in the use of physical restraints among publicly owned facilities. This is consistent with the trends by bed size.

5.2 Data Limitations and Biases The OSCAR data used in this report represent the best single source of national data about characteristics of ICFs/MR and the clients they serve. Nonetheless, we recognize that these data are limited in several important ways.

Data on facility and client characteristics and staffing are collected using HCFA’s form 3070G. This form is completed by the facility administrator and other staff. While glaring errors in data may be caught by surveyors while on site, there are no routine processes for auditing the data for accuracy. We identified obvious errors, such as reporting more clients than beds, during our data cleaning. However, we had no method for identifying other data errors.

The instructions for reporting some elements on form 3070G are unclear, and therefore may result in inaccurate or imprecise data. Key variables for which the instructions are unclear include the age breakdowns of clients and some of the staffing data. Age variables ask for the number of clients ages 46 to 65, and the number of clients ages 65 or older. This overlap (age 65) means that the person reporting the data must use their discretion in deciding how to report people age 65. The number of individuals who are exactly age 65 at any one time is likely quite small. This imprecision is unlikely to have a large effect, but should be noted. Instructions about reporting staff also are somewhat unclear. In particular, it is not clear whether nursing staff (RNs and LPNs) are to be reported separately or included among direct care staff. The instructions suggest that it depends on the function any one staff person fulfills. If a given staff person fulfills more than one purpose, their time may be double-counted. We identified a limited number of data where comparison of the specific types of staff with the total number of staff suggested that some staff might be reported in more than one place.

The data collected on the 3070G represent a short window in time. Client characteristics are reported as of the last day of the survey. Deficiency data represent the situation as assessed by a particular group of surveyors at a point in time. Thus, the information is static. At best, it provides an annual overview; however, it does not offer any insights into fluctuations during that year.

Deficiency data are indicators of failure to meet the standards specified in regulations. They are a recognized, national source of quality information. However, the reader should keep in mind that there are many aspects of quality that may not be well represented by deficiency data.

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Deficiency data are further limited in their use as measures of quality, due to concerns about inter-rater reliability. There is some evidence that surveyors are idiosyncratic in the ways that they identify deficiencies, and in the specific deficiency codes used. For example, surveyors with backgrounds in pharmacy may be more likely to identify concerns related to medications use than are surveyors with other types of training. In addition, several deficiency codes overlap in the areas addressed. For example, whether a surveyor who identifies a concern with overuse of physical restraints cites code W128 (ensure that clients are free from unnecessary drugs and physical restraints . . .) or W302 (a client placed in restraint must be released from the restraint as quickly as possible) is a personal decision. While this issue has not been studied within the ICF/MR program, an analysis of citation patterns related to nursing homes shows a tremendous amount of variation by state and individual surveyor. The differences in citations found in that study could not be attributed to actual differences in quality (Stegemann, 1998).

There is tremendous variation in numbers of facilities, beds, and clients across states. Data that indicate percents, particularly of client characteristics, are affected by these differences in denominators. For many variables, we reported the number of cases rather than the percentage, in order to accommodate this problem. Care must be exercised in comparing situations across states because of these differences.

Some clients have challenging behaviors that the facility may choose to manage in a variety of ways. The OSCAR data include information on the use of some behavior management techniques that have particular risk of misuse or abuse. These techniques include chemical and physical restraints, time-out rooms, and noxious or painful stimuli. The data on the number of clients with care plans using these techniques can be understood both as providing information about behavioral needs of clients, and about behavior management practices of the facility. Unfortunately, within the constraints of these data, it is not possible to separate these two issues. There are no data to indicate the total number of clients with behavioral concerns, nor is there information on clients with similar behavioral concerns that are addressed using other approaches. Given the tremendous amount of concern about best methods for treating behavioral concerns, this is an unfortunate limitation.

We presented data aggregated for states, or by bed size or ownership. These aggregate data must be interpreted cautiously, as they mask great diversity among the individual facilities.

5.3 Recommendations for Changes to the OSCAR Data Base

The information presented here provides a detailed view of ICFs/MR operating at a point in time. While the OSCAR data are extremely useful for this purpose, their value could be improved further with a few changes.

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Data currently are not audited for accuracy. While we had no reason to question most data, there were situations in which data clearly were wrong. This is particularly true for staffing data. This is an area in which a simple set of edit checks could be automated and would be extremely useful.

Clarification of instructions on form completion would be helpful. Two areas in particular need of clarification are the classification of people who are age 65, and the method for classifying licensed nursing time. In the former case, people who are age 65 may be classified in either of two age categories. While we did not find any cases of facilities double-counting individuals, this does create inconsistency across facilities. In the case of the latter variable, licensed nurses may be reported either as direct care staff or nursing staff, depending on the tasks they perform. These instructions are likely to be difficult for facilities to follow. We identified some cases in which it appeared that nurses’ time was reported as one or the other, but not both, where both clearly would have been reasonable. We also identified cases in which it appeared that nurses’ time was counted both under RN/LPN time and in direct care staff time, although it was not double-counted in the total staff time.

Data on the frequency with which particular behavioral control techniques are used confound two issues: the number of clients who have need of behavior management, and the approaches chosen by the facility. The addition of variables to indicate the number of clients with behavioral management concerns would help to make these data more meaningful.

Information about staffing is reported as total FTEs by type of staff. Further breakdown by full-time, part-time, and contract staff would be helpful. These breakdowns are reported in OSCAR for nursing facilities, and could be similarly collected for ICFs/MR.

5.4 Conclusions

Despite the limitations noted, analyses of these data are quite useful. A number of lessons can be learned, and opportunities for further study identified.

The philosophy of how best to meet the needs of people with developmental disabilities has changed over recent decades. Recent years have brought an increase in the supply of home and community-based services. This has likely put pressures on ICFs/MR to alter the mix of clients that they serve and the ways in which they serve them. Some of these changes can be observed by comparing OSCAR data across time and noting changes in the characteristics of clients.

In 1999, ICFs/MR could best be described as varied. There was no “average” ICF/MR. Facilities differed in the number of clients they served and the needs of those clients. Although state facilities tended to be larger and serve more severely disabled individuals than did other types of facilities, this was not true in all cases.

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Many differences were observed across states. Some states have made concerted efforts to close their ICFs/MR, with Alaska succeeding in closing all of its six facilities, Michigan reducing the number from over 400 to only two, and many other states also making significant reductions. The number of ICFs/MR operated by any state varies tremendously, from one to over 1000. Such differences clearly reflect state policies and philosophies, especially as some states “closed” ICFs/MR simply by decertifying them and allowing them to operate under Medicaid waiver programs instead. A study of ICFs/MR in the context of state policies regarding waiver services and processes for determining eligibility for various services would be extremely useful at this time. Particular attention should be given to any effect of ICF/MR closings on clients’ access to needed services and supports.

The ability to identify facilities serving particular client types, in combination with deficiency data, can provide an opportunity to identify “best practice” models, particularly for facilities serving specialized populations. Deficiency data provide a limited perspective on quality, but can serve as an initial step in identifying presumed differences in quality across facilities, with other data sources providing validation.

Finally, we note that this study presented information on ICFs/MR only. Given the trend to waiver services, coupled with the trend toward smaller facilities, study of the entire service system is needed. Questions to be addressed by such studies would include the identification and specification of differences between small ICFs/MR and waiver homes; differences in the types of client needs served in the different settings; differences in staffing levels and staff training; processes for accessing one setting or the other; and differences in the quality of care and quality of life provided by each setting.

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References

Braddock, D. (1998). Mental retardation and developmental disabilities: Historical and contemporary perspectives. In D. Braddock, R. Hemp, S. Parish, and J. Westrich (Eds). The state of the states in developmental disabilities (5th edition). Washington, DC: American Association on Mental Retardation. Bradley, VJ and J. Knoll (1990). Shifting paradigms in services to people with developmental disabilities. Cambridge, MA: Human Services Research Institute. GAO (1996). Oversight of Institutions for the Mentally Retarded Should be Strengthened. September 1996. Health Care Financing Administration. (1998). State Operations Manual, Provider Certification. Department of Health and Human Services. Transmittal No. 1, March 1998. Karon, SL and S Bernard. (2000) Review of Existing Performance Measures/Quality Indicators for Services to People with Developmental Disabilities. Report to the Health Care Financing Administration. November 2000.

Lakin, KC, L Anderson, C Clayton, B Polister, and RW Prouty. (2000) Utilization of and expenditures for Medicaid institutional and home and community based services. In R Prouty and KC Lakin (Eds.), Residential services for persons with developmental disabilities: status and trends through 1999. Report #54, May 2000. Downloaded from http://rtc.umn.edu/risp99/sec08b.html, 1/25/01. Lakin, KC, L Anderson, C Clayton, B Polister, RW Prouty. (1999) Utilization of and expenditures for Medicaid institutional and home and community based services. In Prouty, R and KC Lakin (Eds.). Residential services for persons with developmental disabilities: status and trends through 1998. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration. Lakin, KC, RH Bruininks, and SA Larson (1992). The changing face of residential services. In L. Rowitz (Ed.), Mental retardation in the year 2000. New York: Springer-Verlag.

Larson, SA and KC Lakin. Status and changes in Medicaid’s Intermediate Care Facility for the Mentally Retarded (CF-MR) program: Results from analysis of the Online Survey Certification and Reporting System. Minneapolis: University of Minnesota, Center on

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http://rtc.umn.edu/risp99/sec08b.html

Residential Services and Community Living, Institute on Community Integration (UAP). 1995.

Olney, MF and PR Salomone (1992). Empowerment and choice in supported employment: Helping people to help themselves. Journal of Applied Rehabilitation Counseling, 22(3): 41-44. Prouty, RW and KC Lakin, Eds. (1999) Residential services for persons with developmental disabilities: status and trends through 1998. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration. Stegemann, A. (1998) Analysis of LTC Survey Time and Workload Factors. Center for Health Systems Research and Analysis. January 1998. Wolfensberger, W (1977). A brief overview of the principle of normalization. In SA Grand (Ed.). Severe disability and rehabilitation counselor training. Albany: State University of New York.

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Appendix A

State Profiles: ICF/MR Facilities and Clients, 1999

Intermediate Care Facilities for the Mentally Retarded:

State Profiles: Facility and Client Characteristics, 1999

Introduction The data presented in this report provide an overview of the types of ICF/MR facilities operated and clients served in each state. Such information is useful to individuals wishing information about a specific state, or wishing to make comparisons across specific states. More detailed cross-state comparisons and analyses by facility size and ownership can be found in the report to which this is appended.

Methods

The data source and definitions of (most) variables reported here were described in the body of the report to which this is appended. The interested reader is referred to that text. The data by state include two additional variables, not included in the main text of this report, which we define here.

Facilities at same address. There are some ICFs/MR that are co-located, so that independent wings or cottages, each with its own provider number and certification, form a type of campus. We note here the number of these types of facilities that are state owned. Most frequently cited deficiencies. The ten deficiencies cited most often in the state. These deficiencies and their absolute frequency (i.e., number of facilities in which they were cited) are depicted graphically.

Data Limitations and Biases The OSCAR data used in this report represent the best single source of national data about characteristics of ICFs/MR and the clients they serve. Nonetheless, we recognize that these data are limited in several important ways. We briefly note these concerns here. A more in-depth discussion of the limitations can be found in the body of this report.

Data on facility and client characteristics and staffing are collected using HCFA’s form 3070G. HCFA does not audit the data. We identified and cleaned data for obvious errors, but had no method for confirming other data.

The instructions for reporting some elements on form 3070G are unclear, and therefore may result in inaccurate or imprecise data. Key variables for which the instructions are unclear include the age breakdowns of clients and some of the staffing data.

The data collected on the 3070G represent a short window in time. Data provide an annual overview, but do not offer any insights into fluctuations during the year.

Deficiency data are a recognized, national source of quality information. However, the reader should keep in mind that there are many aspects of quality that may not be well represented by deficiency data.

There is tremendous variation in numbers of facilities, beds, and clients across states. Data that indicate percents, particularly of client characteristics, are affected by these differences in denominators. Care must be exercised in comparing situations across states because of these differences.

Some clients have challenging behaviors that the facility may choose to manage in a variety of ways, some of which are presented in OSCAR. The data on the number of clients with care plans using these techniques can be understood both as providing information about behavioral needs of clients, and about behavior management practices of the facility. Within the constraints of these data, it is not possible to separate these two issues.

Conclusions The information presented in this Appendix provides a basis for understanding state differences in the use of ICFs/MR. Data about facility characteristics offer insight into the market characteristics. Differences in facility sizes and ownership may reflect philosophies about appropriate care venues. Client characteristics provide information about the types of needs being met by ICFs/MR. Information on the nature and frequency of deficiency citations provides a limited view on quality of care and quality of life for ICF/MR clients. Together these data present a snapshot of the nation at a point in time, and a baseline for understanding changes as we move into the 21st century.

Appendix B HCFA Form 3070G

Appendix C

Selection of Highlighted Deficiencies

Appendix C 1

Introduction State profiles provide one way to view ICF/MR characteristics across states. These characteristics include aspects of the facilities, the clients served, and the quality of care provided. “Quality” was represented here by data about deficiencies cited during surveys. There are important differences between deficiencies, which are failures of compliance, and quality indicators, which are markers of potential problem areas within facilities. Some deficiencies, however, do identify issues that are similar to those one would want to have addressed by quality indicators. Further, deficiencies currently offer the only way to compare data on quality across facilities nationwide. We identified a subset of ten deficiency codes that capture issues similar to the types of quality issues others have identified as important. Our purpose was to identify a set of deficiencies for comparison across states and groups of facilities defined in a variety of ways (e.g., ownership, size). Because the meaning of quality varies across individuals, we sought input from a number of people in making our selections. The process we followed to make these decisions is described in this document. Methods Staff at the Health Care Financing Administration (HCFA) selected an initial set of twenty deficiency codes. These codes were selected based on the staff members’ opinions that they captured aspect of care with impact on the quality of life of ICF/MR clients. Table 1 presents the twenty codes identified by HCFA staff. We sought review of these deficiencies from a wide variety of people. Reviewers included contractor staff and members of two advisory groups: a Technical Expert Panel (TEP) and a Stakeholders Group (SG). These two groups have been convened to assist in the work of HCFA Contract Number 500-96-0010/0005, Development and Validation of a Performance Measure Set/Quality Indicators for the Evaluation of Medicaid Services Rendered to People With Mental Retardation or Developmental Disabilities. Letters were sent to all individuals inviting them to review and rank the 20 deficiencies in order of importance. We provided a form for reviewers to use in ranking the deficiencies. Individuals were asked to respond within two weeks, and were told that responses received after that date would not necessarily be considered in the selection process. Information from completed forms was entered into a database as it was received. We assessed the importance of the deficiencies in two ways. First, we calculated the average rank assigned by the reviewers. A rank of “1” was used to indicate the most important

Appendix C 2

Table 1. Preliminary Deficiency Codes Selected by HCFA Staff W125 Allow and encourage individual clients to exercise their rights as clients of the facility, and as

citizens of the United States, including the right to file complaints and the right to due process.

W127 Ensure that clients are not subjected to physical, verbal, sexual or psychological abuse or punishment.

W128 Ensure that clients are free from unnecessary drugs and physical restraints and are provided active treatment to reduce dependency on drugs and physical restraints.

W129 Provide each client with the opportunity for personal privacy.

W133 Ensure that clients have the opportunity to communicate, associate and meet privately with individuals of their choice.

W242 Include, for those clients who lack them, training in personal skills essential for privacy and independence (including but not limited to toilet training, personal hygiene, dental hygiene, self-feeding, bathing, dressing, grooming, and communication of basic needs), until it has been demonstrated that the client is developmentally incapable of acquiring them.

W247 [The individual program plan must] [i]nclude opportunities for choice and self-management.

W249 As soon as the interdisciplinary team has formulated a client’s individual program plan, each client must receive a continuous active treatment program consisting of needed interventions and service in sufficient number and frequency to support the achievement of the objectives identified in the individual program plan.

W285 Interventions to manage inappropriate client behavior must be employed with sufficient safeguards and supervision to ensure that the safety, welfare and civil and human rights of clients are adequately protected.

W289 W289 - The use of systematic interventions to manage inappropriate client behavior must be incorporated into the client’s individual program plan, in accordance with 483.440 (c)(4) and (5) of this subpart. [written, measurable, etc.]

W295 [The facility must employ physical restraints only] [a]s an integral part of an individual program plan that is intended to lead to less restrictive means of managing and eliminating the behavior for which the restraint is applied.

W302 [A client placed in restraint must be] [r]eleased from the restraint as quickly as possible.

W313 Drugs used for the control of inappropriate behavior must not be used until it can be justified that the harmful effects of the behavior clearly outweigh the potentially harmful effects of the drugs.

W314 [Drugs used to control behavior must be monitored closely] [i]n conjunction with the physician and the drug regimen review requirement at 483.460(j) [pharmacist review and individual drug administration records]

W322 [The facility must provide or obtain] preventive and general [health] care.

W356 [The facility must ensure comprehensive dental treatment services that include] [d]ental care needed for relief of pain and infections, restoration of teeth and maintenance of dental health.

Appendix C 3

Table 1. Preliminary Deficiency Codes Selected by HCFA Staff (continued)W369 All drugs, including those that are self-administered, are administered without error.

W436 [The facility must] [f]urnish, maintain in good repair, and teach clients to use and to make informed choices about the use of dentures, eyeglasses, hearing and other communications aids, braces, and other devices identified by the interdisciplinary team as needed by the client.

W438 The facility must develop and implement detailed written plans and procedures to meet all potential emergencies and disasters such as fire, severe weather, and missing clients.

W460 Each client must receive a nourishing, well-balanced diet including modified and specially prescribed diets.

deficiencies. The ten deficiencies with the lowest average ranks were considered the most important. We also counted the number of individuals who ranked each deficiency among their top ten. The deficiencies with the most “top ten” votes were considered the most important. Findings Selection of Deficiencies Responses were received from 19 people, including 7 contractor staff, 8 SG members, and 4 TEP members. This represented a 66% response rate. A few of the respondents completed the task in unique ways. One person assigned all deficiencies a rank of either “1” or “2”. Two other respondents ranked only the top ten, but did not assign ranks to the remaining ten deficiencies on the list. We conducted sensitivity analyses to determine the impact of these responses. We analyzed the results both with and without the one response that ranked all deficiencies “1” or “2”. We also examined the impact of leaving the unranked deficiencies with no score, and of assigning all unranked deficiencies the midpoint of the missing scores (15.5). One of the respondents asked four other individuals, with a variety of perspectives, to complete the task. We also examined the impact of including these responses. With few exceptions, the lists that one would select did not change under these various scenarios. The lists selected based on average ranks versus number of times in the top ten also were quite consistent. Of the eight sets of analyses we conducted, six of them resulted in the same set of deficiencies being selected. The other two analyses illustrated a “boundary” issue, in which the deficiency that was ranked in eleventh place in the other analyses moved across the border and replaced one of the other deficiencies. In Table 2, we show the deficiencies that would be chosen in any of the analyses, and the number of analyses in which they were ranked among the top ten.

Appendix C 4

Appendix C 5

Table 2. Deficiencies by Number of Analyses in Which They Were in Top Ten

Deficiency Code and Description

Number of Times In Top Ten

W125 Allow and encourage individual clients to exercise their rights as clients of the facility, and as citizens of the United States, including the right to file complaints and the right to due process.

8

W127 Ensure that clients are not subjected to physical, verbal, sexual or psychological abuse or punishment.

8

W128 Ensure that clients are free from unnecessary drugs and physical restraints and are provided active treatment to reduce dependency on drugs and physical restraints.

8

W129 Provide each client with the opportunity for personal privacy. 8

W133 Ensure that clients have the opportunity to communicate, associate and meet privately with individuals of their choice.

7

W242 Include, for those clients who lack them, training in personal skills essential for privacy and independence (including but not limited to toilet training, personal hygiene, dental hygiene, self-feeding, bathing, dressing, grooming, and communication of basic needs), until it has been demonstrated that the client is developmentally incapable of acquiring them.

8

W249 As soon as the interdisciplinary team has formulated a client’s individual program plan, each client must receive a continuous active treatment program consisting of needed interventions and service in sufficient number and frequency to support the achievement of the objectives identified in the individual program plan.

7

W285 Interventions to manage inappropriate client behavior must be employed with sufficient safeguards and supervision to ensure that the safety, welfare and civil and human rights of clients are adequately protected.

8

W295 [The facility must employ physical restraints only] [a]s an integral part of an individual program plan that is intended to lead to less restrictive means of managing and eliminating the behavior for which the restraint is applied.

2

W322 [The facility must provide or obtain] preventive and general [health] care.

8

W460 Each client must receive a nourishing, well-balanced diet including modified and specially prescribed diets.

8

For purposes of the ICF/MR profiles, we selected those deficiencies that were among the top ten in at least seven of the analyses. The final list of deficiency codes includes all those in Table 2, with the exception of W295. In addition to the weight of evidence supporting this decision, we believe the decision is conceptually sound. Deficiency code W295, which was not selected, addresses limitations on restraint use. Restraints are included in the issues addressed by deficiency code W128, which is already included in the list. Other Issues In addition to ranking the deficiencies, three reviewers sent letters expressing concerns. One of these reviewers also had asked four other interested parties to rank the deficiencies and comment on the exercise. Thus, the comments received reflected at least the perspectives of seven individuals. All of the individuals who wrote were concerned that the selection of these deficiencies was related to the primary task of the contract, which is to develop a set of quality indicators with application to Medicaid services for people with developmental disabilities. They did not want the deficiencies selected to be the basis for defining quality indicators. This is not the case. This task is independent of the other project work. It is intended only to provide HCFA with a baseline picture of the status of ICFs/MR. Several reviewers expressed concern that deficiency data do not capture the many factors that affect quality of life. Simply meeting the protections offered by the regulations does not necessarily insure a high quality of life. We agree with this perspective. Quality of life is an expansive concept, and a highly personal one. It is well beyond the scope of regulations to address all that affects any individual’s quality of life. However, regulations can and do address issues that have impact on quality of life. Reviewers also noted that quality is, as noted above, a highly personal concept. The issues that one person rates as important may not be important to another person. Again, we agree with this statement. The process for selecting these deficiencies sought to include a variety of opinions. We were aided in that by the one TEP member who sought out the assistance of four other people, including the parent of an adult ICF/MR client. Based on the distribution of responses received, it is clear that people have diverse perspectives. Indeed, only one of the deficiencies was rated among the top ten by all 23 reviewers. A different set of people might have chosen a different set of deficiencies. The consistency of the set chosen across different analyses lends support to this set. We note also that the purpose of the deficiencies chosen is merely to provide some basis for comparison across states. We do not intend that the selection of these deficiencies should be interpreted as meaning anything more than that. Individuals using these data should be cautioned that the data present only a partial picture of the situation in states.

Appendix C 6

Appendix C 7

A related comment also addressed the intent of this exercise. Concern was raised that policy makers might interpret lower ratings as meaning that a given deficiency was unimportant, and therefore be tempted to weaken or eliminate the protection offered by the associated regulation. While we cannot speak to HCFA’s intentions overall, that was not the purpose of this exercise. Indeed, HCFA staff selected these twenty deficiencies for review because they believed they were important. Finally, reviewers commented on the similarities and differences among these twenty deficiencies. They noted that several of them addressed similar issues, with varying degrees of specificity and perspectives. Some regulations address bureaucratic processes, while others address the outcomes of those processes for individual clients. We believe that the difference in perspectives on similar issues allowed reviewers to identify those that they believe are most important. The values that people place on processes versus outcomes may differ by individuals. Again, one of the strengths of this exercise was the opportunity to gain insight into diverse perspectives on these issues.

Documents

Intermediate Care Facilities for the Mentally Retarded ......In 1999, 111,532 people with mental retardation and other developmental disabilities were receiving support and care in