C I J/J : Y-3 technical paper <$> 1976 Survey of I nstitutionalized Persons: • If i U.S. Department of Commerce BUREAU OF THE CENSUS Digitized by the Internet Archive in 2012 with funding from LYRASIS Members and Sloan Foundation http://archive.org/details/1976surveyofinst00unit technical paper ^ 1976 Survey of Institutionalized Persons: and Issued June 1978 U.S. Department of Commerce Juanita M. Kreps, Secretary Courtenay M. Slater, Chief Economist BUREAU OF THE CENSUS Manuel D. Plotkin, Director BUREAU OF THE CENSUS Manuel D. Plotkin, Director Robert L. Hagan, Deputy Director Daniel B. Levine, Associate Director for Demographic Fields DEMOGRAPHIC SURVEYS DIVISION Earle J. Gerson, Chief ACKNOWLEDGEMENTS This report was prepared by Dennis W. Stoudt of the Health Statistics Branch, Demographic Surveys Division, with the participation and under the supervision of Rachel F. Brown, Assistant Chief, and Evan H. Davey, Chief of the Health Statistics Branch. Those portions of the text dealing with statistical procedures and sample design were provided by, or prepared under the direct guidance of Anthony G. Turner, Statistical Research Division. These and many other members of the Census Bureau staff, especially Stanley Greene, Assistant Chief for Current Surveys, and Earle J. Gerson, Chief of the Demographic Surveys Division, contributed to this report by their comments and suggestions. Library of Congress Cataloging in Publication Data United States. Bureau of the Census. 1976 survey of institutionalized persons. (Technical paper - Bureau of the Census ; 42) 1. Extended care facilities— United States. 2. Health surveys— United States. 3. Chronically ill- Institutional care— United States. 4. Handicapped- Institutional care— United States. I. Stoudt, Dennis W. II. Title III. Series: United States. Bureau of the Census. Technical papers ; 42. RA997.U45 1978 362.1 '6'0973 78-606082 For sale by Superintendent of Documents, U.S. Government Printing Office, Washington, D.C. 20402, or any U.S. Department of Commerce district office. Postage stamps not acceptable; currency submitted at sender's risk. Remittances from foreign countries must be by international money order or by a draft on a U.S. bank. Stock Number 003-024-01600-1 CONTENTS Page Preface iv Introduction . 1 Development and Field Trial of Pretest Questionnaires and Procedures 1 Questionnaires 2 Summary of Pretest Results 4 National Survey 6 Sample Selection 6 General 9 Survey Instruments 10 Training 11 Field Work 11 Results of the Data Collection 12 Data Processing 14 Estimation Procedure 14 Publication 15 Reliability 15 Appendix A— Survey Forms 16 Institution questionnaire 16 Resident questionnaire 32 Family questionnaire 52 Sampling questionaire and sample person list 63 Flashcard booklet 71 Appendix B— Definition of Survey Terms 80 Preface The main purpose of this report is to outline the methods and procedures used to conduct the Survey of Institutionalized Persons (SIP). The SIP was a one-time survey which made use of complex procedures for numerous aspects of the sampling design and data collection. For this reason, a thorough explanation of the procedures employed seems justified. In addition, it is hoped that the content and format of this report will serve to document, for the benefit of those involved with future survey work in this area of inquiry, the types of situations encountered as well as the methods used to accomplish the design and conduct of the SIP. However, an equally important objective is to provide technical support for the Current Population Report (P-23, No. 69) of the survey results. The successful completion of the SIP was made possible by the cooperation of many individuals within the U.S. Department of Health, Education, and Welfare and the Bureau of the Census. A special note of appreciation is expressed to the staff, and residents and their families, of the participating facilities. 1976 Survey of Institutionalized Persons: Methods and Procedures INTRODUCTION The Bureau of the Census conducted a Survey of Institu- tionalized Persons (SIP) in early 1976 under the sponsorship of the U.S. Department of Health, Education, and Welfare (HEW). The survey was designed to obtain information about the services and resources of long-term care facilities providing care for persons with chronic conditions, diseases, and/or handicaps; institutions for the mentally ill and mentally retarded; nursing homes and homes for the aged; and residential schools and treatment centers. Information, including the type of care provided to residents, the sources of financing for this care, and possible alternatives for a patient's care, was also collected about and from the residents (patients) in the institutions, as well as their families. Six major areas of concern were examined by the SIP: 1. Appropriateness of admission/placement and discharge. The process which results in the institutionalization or discharge of an individual ranges from a simple to a very complex decision. The SIP examined the alternatives considered and the referral and/or assistance services utilized, the circumstances of the admission to the facility, and the resident's prospects for discharge. 2. Institutional environment. The physical and staffing characteristics of the institution, the activities available, and the characteristics of the resident's living quarters were studied to determine the quality of life offered by the institution. 3. Resident's rights and legal status. The survey studied those administrative policies of the institution which had impact on a resident's rights (to legal counsel, visitors, and so forth) and whether the resident was legally competent or under the custody or guardianship of another person or an agency. 4. Type of care provided. While the "real" or actual quality of care could not be feasibly measured, the SIP examined the medical and nonmedical services needed and/or provided to the resident. 5. Financial Considerations. Information was obtained about the charges and cost of care provided by the institution, and the sources of payment for this care. The financial effect on the family was also measured. 6. Effect of Government Programs and Policies. The relative proportion of the cost for institutional care contributed by government support programs was measured, along with the impact of government programs and/or policies upon the staffing, physical plant, and the provision of certain types of services. In addition, SIP examines numerous other facets of institu- tionalization enabling it to meet three general design objectives: (1) it examines the characteristics for all long-term care institutions, their resident population, and the families of residents, thus providing a statistical profile of long-term institutional care; (2) updates information obtained in the 1967 Survey of Institutionalized Adults conducted by the Social Security Administration (SSA); and (3) provides baseline data for the evaluation of current programs and policies which effect institutions and/or the institutionalized. The SIP was a sample survey and initially included 928 institutions selected from the 1973 Master Facility Inventory (MFI) file, which is a census of all residential long-term care facilities (a majority of residents having a lengthof stay averaging 30 days or more) conducted by the National Center for Health Statistics (NCHS). Penal and/or juvenile detention facilities were excluded from the SIP sample because they function as incarceration facilities rather than as personal care facilities. The SIP sample was stratified by size (under 100 beds, 100-349 beds, 350+ beds) and type of facility (nursing homes, facilities for the mentally retarded, psychiatric institutions, children's facilities, facilities for the physically handicapped, and other care facilities). Within each sample institution, the administrator, staff members, and a sample of residents were interviewed, and administrative records were consulted. A sample of residents' families was also selected for interview. SIP was a voluntary survey conducted under the authority of title 42, United States Code, section 2825. A census report (P-23, No. 69) has been published describing the statistical results of SIP, and a public use tape is available from the Super- intendent of Documents. This report will, therefore, deal only with the methods and procedures used in planning for and con- ducting the survey; substantive results are contained in the aforementioned publication. Development and Field Trial of Pretest Questionnaires and Procedures HEW contacted the Bureau of the Census in January 1975 about conducting a survey on long-stay medical and residential institutions focusing on the resident population as well as the families of residents. The basic design of the survey was developed by the General Research Corporation (GRC) under contract to HEW. It proposed that four sets of respondents be personally inter- viewed to obtain a comprehensive insight into institutional- ization: the process, the impact on individuals and on society, and the characteristics of the institution, its resident population and their families. 1 This proposal required that each sample institution permit (1) the selection of a sample of residents from its roster; (2) interviews with the administrator, staff members, and the residents selected for the sample; and, (3) the release of the names and addresses of family members. A review of this proposal raised the following six central questions regarding the ease of operation and the quality of the results: 1. Would the administrator permit access to the institu- tion's files, staff members, and residents? 2. What legal and administrative constraints would affect the selection and interviewing of the residents and/or the use of administrative records? 3. How many residents would be able to provide coherent responses? 4. How easy would it be to locate the family members, particularly since some residents had been institutionalized for many years and had no contact with or visits from their families? 5. Would the family members be embarassed or hostile about being contacted about the institutionalized family member? 6. Could the interview with the family member be conducted by telephone? In orderto assess thepotential impact of these issues, evaluate the procedures, and test the survey questionnaires, a pretest was conducted during June 1975. The institutions included were selected from the 1971 Master Facility Inventory (MFI) as this was the most recent MFI listing available at the time of the pretest 1 . The selection of pretest institutions was to include facilities of varied sizes and care types within the prescribed geographic areas (both urban and rural) to maximize the diversity of interviewing situations which might be encountered. In selecting the pretest institutions from the MFI it was noted that several institutions were either listed more than once or that parts of an institution with slightly different names, but with an identical address, were listed separately. Several institutions of this type were purposely included in the pretest sample to develop procedures for handling such situations in the survey, depending upon whether these were actually separate facilities or one facility. Twenty institutions in Georgia and 20 in Illinois were See page 6 for a detailed description of the MFI. SIP Physically handicapped Children's Psychiatric selected for pretest interview. The sample for Georgia included two physically handicapped, five children's, three psychiatric, four mental retardation, three convalescent (nursing homes), and three "other" facilities representing all size strata. The pretest institutions in Illinois included three physically handi- capped, three children's, five psychiatric, four mental retarda- tion, three convalescent, and two "other" facilities, again, from all size categories. The six SIP "type" categories mentioned are comprised of the MFI designations shown below. Questionnaires A separate questionnaire was designed for each set of respond- ents (administrators, staff members, residents, and families), as well as one for the selection of sample residents. Two versions of the questionnaires for the staff members and the residents were pretested to determine the feasibility of obtaining specific detaiis on the physical and mental condition of each sample resident and the medical treatment he/she was receiving as well as the more general types of information finally collected. The institution questionnaire. This was designed specifically to gather information about the facility: ownership, type of care provided, length of stay for residents, bed size, accredi- tation, administrative policies, facilities, staff composition and demographic characteristics, services provided, and information on costs and fees. The respondent was the administrator or a representative of his staff. At the end of the interview the administrator was asked to authorize the interviewer to select a sample of residents and interview them, interview staff members about these residents, and obtain information from the institu- tion's administrative records (including the name and address of the next of kin). Following the institution interview, a sample of residents was selected. The interviewer was provided with a resident sampling questionnaire, which contained a "start-with" and "take-every" (SW/TE) interval to be applied to a list or register of the patients within an institution. For the pretest, the SW/TE interval was designed to obtain approximately 10 sample residents from the institution. Contained within the sampling questionnaires were procedures designed to identify all eligible residents and to rectify excessive differences (greater than 10%) between the 1971 MFI bed count and the count of residents received at the time of interview. Sampling was conducted by the interviewer with the assistance of the institution's records personnel. In some instances, however, the facility did the sampling in accordance with the interviewer instructions to maintain the confidentiality of the resident register. MFI Mentally handicapped Nursing homes Other facilities Facilities for the blind, deaf, and physically handicapped. Orphanages, homes for unwed mothers, and sheltered or custodial care homes. Resident treatment centers for alchoholics' and drug abusers, and facilities fortheemotional- ly disturbed. Facilities for the mentally retarded and other neurologically handicapped persons. Nursing homes, nursing care units, convalescent or rest homes, and homes for the aged. Extended care units of hospitals and other facilities (VA hospitals, chronic disease, etc.). The administrative questionnaire. This obtained data about sample residents, including demographic information, next of kin, reason for admission, sources of financial support, resident activity, services used, and resident visitation and leave patterns. The questionnaire had two sections; the first covered admini- strative information about the sample resident and was obtained from a staff member and/or was transcribed from the admini- strative records. The second section included questions about the resident's present condition, care, and activities, and was completed through a personal interview of a staff member having frequent contact with the resident. As mentioned earlier, the only major differences between the two versions of the administrative questionnaire were that one focused more heavily on limiting conditions (medical), the use of prescriptions, and medical treatments, while the other version was concerned mainly with the reason for institutionalization, the use of services, and discharge expectations. The resident questionnaire. There were two versions of this questionnaire; both of which obtained information directly from the sample resident, providing he/she was mentally and physically able to respond and 14 years old or over. Both versions contained six screening questions designed to test the resident's ability to respond. These questions asked the resident for his/her full name, as well as that of the mother and father; the date of birth; present age and highest grade of school com- pleted. If he/she was mentally and/or physically unable to con- tinue past the screening questions, the interview was terminated. For those able to proceed, the questions covered the resident's social and employment activities, the care received at the in- stitution, financial status, and medical needs. The only marked difference between the two versions was that one focused on the resident's mental and physical ability for independent func- tioning, while the other dealt with current and former activities, serivces used, and social contact. The family questionnaire. This was designed to obtain data from the next of kin of sample residents concerning the resident's institutionalization, former residence, legal status, previous institutionalizations, discharge expectations, needed services, and the effects of the institutionalization upon the family. Family respondents were contacted by telephone or personal visit, depending on their proximity to an SIP inter- viewer; that is, families residing within a 50-mile radius of an SIP pretest interviewer were enumerated by personal visit interview, and those outside the 50-mile radius were enumerated by telephone interview. Pretest training. Training for this survey began prior to the classroom training of interviewers and supervisory staff, each interviewer and supervisor completing a 7-hour home study. The home (self) study provided a copy of all forms and detailed instructions on filling them, as well as an explanation of the survey and related procedures for handling difficult or complex interview situations. A one-day training session was held for the field staff assigned to the pretest. A supervisor and clerk in each area were assigned to administer the pretest with an interviewing staff of nine enumerators in Georgia and 11 in Illinois. The Washington field and subject-matter staff provided the classroom instruc- tion, as well as observing some interviews following the class to help with on-the-job training and to get first hand experiences of how well the survey plans anticipated and coped with interviewing situations. During the pretest, any questions which arose were resolved by the Washington staff. In this way, problems with the forms or procedures were brought to the attention of the subject-matter staff responsible for adjustments in the forms or procedures. Interviewers were to record any minor difficulties encountered or impressions concerning questionnaire items on the pretest questionnaires so the Washington staff would be aware of such situations and be able to make necessary changes for the national survey. In addition, interviewers completed a four-page evaluation form dealing with all parts of the interviewing sequence from the institution through the family questionnaire. Information such as length of time for interviews, the staff position of institution respondents, problematic or difficult situations, and so forth, were recorded by the interviewer. This information was supplemented by a one-day debriefing session held at the Atlanta and Chicago regional offices to discuss the observations and problems encountered by the interviewers, and their recommendations for resolving these issues. In fact, several questions were rewritten and procedures revised as a result of the interviewers' recommendations. In addition, tallies were made for many of the items on the questionnaires to study the pattern of responses. These methods, as well as the Washington staff's own observations and experiences, in conjunction with input from the sponsor, were used to make the necessary changes ifi the pretest instruments and procedures. Pretest enumeration. Interviewers began their assignments by telephoning the administrator for an appointment about one week after the introductory letters were mailed to the admini- strator. The sequence of interviewing was to complete in institution questionnaire with the administrator, and then for him/her to sign a form authorizing the Census Bureau inter- viewer to obtain data from the patient register, administrative records, staff members, and sample residents. The administrator could therefore agree to allow access to all, some, or none, of the sources of information requested. Every attempt was made, however, to gain access to all of the information sources requested. The institution questionnaire took an average of 45 minutes to administer. The sampling questionnaire was administered next. Several questions were asked of the respondent and an up-to-date list of all residents was obtained. The sample residents were selected from this list according to the institution sampling interval, as explained previously. After selecting the sample of residents, the administrative and resident questionnaires were completed, depending on the authorization given by the sample institution. If any staff members or sample residents questioned our right to have access to records, staff, or residents, the interviewers were instructed to explain the survey purpose and show the admini- strator's authorization in order to assure the individual the administrator was aware of the survey and had agreed to cooperate. Of the 40 originally assigned pretest institutions, three were found to be subunits of another institution; that is, three institutions were listed separately on the MFI when in fact they were part of another institution for SIP. Therefore, the number of institutions available for interview was actually 37. Dealing with the institution (administrator) part of the interviewing sequence for the moment, the results were as follows: Institution interview status (Pretest) 34 Institutions (SIP-1) interviewed 2 Short-term institutions 1 Out of business institution 37 If the residents of an institution had an average length of stay of less than 30 days, that facility was not considered as a long-term institution and therefore not interviewed. Short-term institutions and facilities which were out-of-business are con- sidered to be "out-of-scope." As a result, those institutions are excluded from a calculation of response results. Thus, the SIP-1 institution questionnaire response rate is 100 percent. In all of the pretest facilities, we were permitted an interview with the administrator or his/her representative, as well as to select a sample of residents and transcribe administrative data and/or interview staff members for the administrative questionnaire. All but four of the pretest institutions allowed the Bureau to interview at least some of the sample residents; thus, in 30 institutions were obtained a minimum of one resident interview with the resident questionnaire, and in five institutions were completed all of the interviews with the sample residents. The resident noninterviews were generally due to the institution's assessment that the respondent was unable to respond, or the resident's own refusal to participate. The success of the family questionnaire exceeded the expectations of the survey planners. All but four institutions permitted access to the name and address of the sampled resident's next of kin (only two institutions would not permit either the interview of residents or access to next of kin); and the response rate was slightly greater than 60 percent. It should be noted, however, that the nonresponse rate of 40 percent included noninterviews for residents without families. The true percentage of residents without families was not known; however, best estimates concluded that the actual percentage was around 30 percent. Number Percent Total Residents eligible for interview Resident interviews Noninterviews Total Families eligible for interview Family interviews Noninterviews 263 100 148 56 115 44 269 100 165 61 104 39 Summary of the Pretest Results The results of the pretest dispelled any reservations about the amount of cooperation given by institutions with respect to allowing the Census Bureau interviewers to use the records of the institution, interview staff members and residents, and obtain next-of-kin information. In addition, it was possible to locate relatives of the sample residents and interview the majority of the relatives by telephone, a procedure that resulted in substantially lower costs than visiting and personally inter- viewing them. Consequently, the preliminary concerns of the survey design developed by GRC were resolved. However, the pretest did uncover a problem which could seriously affect the field procedures, the data counts, and weighting for the survey— how to identify a sample institution. The sample design developed by GRC recommended that the sample institutions selected would be stratified by six major types of care and three size categories for a total of 18 sample strata, and that the sample be drawn from the Master Facility Inventory. While GRC noted that using the MFI would result in the exclusion from the sample of institutions coming into business since the most recent MFI listing (updated every two years), and would include institutions which had since gone out of business, no other potential problems were foreseen. How- ever, upon contacting the institutions selected for the pretest sample, the interviewers found the following situations: 1. Institutions which offered more than one major type of care. 2. Institutions with more than one campus. 3. Institutions listed which were administrative offices and did not provide residential care. 4. Institutions which did not offer long-term care (average stay of 30 days or more). 5. Multiple institutions listed at a single street address. After the pretest, the specifications for the MFI were examined and it was learned that separate facilities are identified by the licensing system used by the local jurisdiction; i.e., if a State or county required that each structure on a campus be licensed separately, each structure was listed sepa- rately on the MFI, whereas another jurisdiction may issue only one license to an institution regardless of the number of structures on campus. Since an institution was defined, for the purposes of SIP, as a facility offering one type of long-term residential care, it was necessary to develop the following guidelines for the inter- viewers to use in identifying a sample unit; these guidelines would also resolve the problems encountered during the pretest. 1 . If the sample institution offered more than one of the six major types of care, each part of the facility offering a distinct type of care was identified and interviewed as a separate sample unit. 2. If an institution had multiple campuses, all offering the same type of care and sharing the same personnel office and administrator, a single sample unit was identified and all campuses were encompassed in the interview with the original sample institution. These criteria (one type of care, same personnel office and administrator) were also applied to situations in which more than one institution was listed at a single street address. 3. If the average length of stay for the entire institution was less than 30 days, but a unit or ward within the facility had an average stay of 30 days or more, just that unit was identified and interviewed as the sample unit. 4. In the cases where a sample facility offered no care (i.e., had no residents), as in the case of an administrative office, this information was transmitted to the Washington staff and individually resolved using the data in the MFI. That is, the cases where the campuses represented by the administrative office were listed on the MFI and, therefore, had a probability for selection apart from the administrative office, no interviews were made. If one of the campuses was not listed on the MFI, it was interviewed since it had no probability of selection in the original sample. In this way, institutions not listed on the MFI or "discovered" institutions were included in the survey results. In order to incorporate these guidelines into the institution questionnaire a series of questions and procedures were added. However, a number of other changes were also made to the survey questionnaires as a result of the pretest. Institution questionnaire: 1. It became apparent after several of the pretest interviews had been completed that the interviewer would need to provide a more complete explanation of the survey to the administrator before he or she would cooperate willingly and fully. Therefore, an introductory statement concerning the survey design and purpose was added to the cover page. 2. A question concerning the type of facility, using the 17 classifications of the MFI, was added to further clarify the "type of care" code. 3. The question concerning average length of stay for residents was rewritten and broadened to insure that short-term units in a long-term facility were excluded from the interview, and vice versa. 4. A question was added to quantify an institution's administrative and/or operational changes because of statutory or regulatory requirements and the source of these changes. 5. A question pertaining to the criteria used in placing residents in a particular living area (ward or cottage) of the facility was incorporated into the questionnaire. This was to be used in determining whether or not the resident placement process was employed as part of an attempt to "normalize" the resident's enviroment (i.e., as part of the treatment process). 6. All sources of support for the facility were added as a question preceding the items about cost of care and fees charged by the institution to determine the funding sources for residential care. Administrative and resident questionnaires: 1. The administrative and resident questionnaires were originally separate documents because there was some concern that the resident would see the responses of the staff member interviewed about him/her if the two parts were in a single form. However, the results of our observations and the interviewers' experiences proved the likelihood of a break in the confidentiality of the response of either the staff member or resident to be remote; particularly since the questionnaires were in possession of the interviewer at all times. We therefore decided to merge these forms for the national survey. 2. As noted earlier, two versions of the administrative and resident questionnaires were used in the pretest. That is, half the sample residents and a staff member were interviewed with one version and the other half with the second version. Specifically, the Social Rehabilitation Services (SRS) was interested in detailed information about the resident's physical condition, use of prescription medications, and the possibility of returning the resident to the community. That is, the SRS proposals focused on the possibility of deinstitutionalization of residents and the concomitant needs of the individual when returned to com- munity; therefore one version incorporated these data needs. This information gave more specific data concerning the physical health of residents. The other focused mainly on understanding the process of institutionalization, which was to be the focal point of SIP. Also, the medically-oriented (SRS) version lengthened the interview period significantly, and, more importantly, most of the staff members (other than doctors) were unable to provide much of the necessary information. With this in mind, most of the medically-oriented questions were dropped; however, several items which worked well in the pretest and which contributed to the objectives of the survey were added to the final version of the resident questionnaire. 3. Only minor changes in wording and format were made in the administrative transcription items. The procedure for transcribing information from the administrative records or interviewing an administrative records staff member (if available and willing) worked well in the pretest and, therefore, was to be continued in the national survey. 4. Several questions about the "environment" of the resi- dent's living area were added to the staff member portion of the questionnaire. These included items concerning the ward or cottage size, number of staff, number of residents, and so forth. These questionnaire items were added to enable HEW to make some assessment about the "quality of life" of the institu- tionalized person. 5. The six screening questions preceding the main questions of the resident portion of the questionnaire were adapted from a psychological scaling device provided by HEW. These questions were administered to assure that persons incapable of answering the detailed questionnaire items were not questioned needlessly. Several questions from the original scale proposed were deleted because they required an awareness of time (such as, "What day of the week is this?"), whileotherswould appear ridiculous to the competent residents (such as "Who is the President of the United States?"). Therefore, six verifiable questions (name, date of birth, age, mother's and father's name, and education level) were adopted, of which three must have been answered correctly or the resident interview was termi- nated. By all accounts, the screening questions worked well during the pretest and therefore, were retained for the full survey. 6. The only major change in the resident interview from the pretest to the national survey was the deletion of a series of income/support questions asked of the resident during the pretest. The most reliable, complete, and accurate financial information was obtained from the administrative records or institution personnel, and, therefore, these items were dropped from the resident interview following the pretest. Family questionnaire: 1. Based on the pretest results, the decision was made that the only eligible respondents for the family interview were to be persons related by blood, marriage or adoption. The only exceptions to this rule were foster relatives of minor children (especially foster parents), who often had detailed knowledge of the resident. Legal guardians were not considered eligible respondents to the family questionnaire, as many of these persons had only a fiduciary relationship to the residents and would not have enough personal knowledge or contact with the resident to provide accurate information about the decision and circumstances to institutionalize the resident, as well as his/her present care and activities at the institution. 2. Several questions were added to the questionnaire item (5) on "previous residence" to determine if the resident's condition and/or subsequent institutionalization had an effect on the household family members either before or after his/her institutionalization or both before and after. 3. The detailed questions about the resident's income and its sources were deleted in favor of gathering this information from the institution's administrative records. An analysis of the financial information gathered in the pretest showed the best results were obtained from that source, and, therefore, there was no need to duplicate the effort. 4. A set of questions was added to determine the financial effect of the resident's institutionalization on the family. These questions asked about loans taken out, assets sold, and/or extra workers entering the labor force or extra work performed by those already in the labor force to help pay for the care of the resident. 5. The pretest experience showed the interview was con- ducted as smoothly and rapidly by telephone as by personal interview and at a considerable reduction in cost; thus, this would be the preferred method of contact in the survey. Sampling Questionnaire: 1. The sampling questionnaire performed well during the pretest and no substantial changes in procedures were con- sidered for that instrument. However, the institution in some cases would not allow the interviewer to see the roster of residents, and, therefore, the facility personnel had to draw the sample of residents. Consequently, procedures were developed to allow the institution to draw the sample providing it did so according to the interviewer's instructions and so long as the interviewer was physically present at the time of sampling. NATIONAL SURVEY Sample Selection The sample for this survey was a three-stage design encompas- sing, respectively, a sample of institutions, a sample of residents within the selected institutions, and a subsample of the families of the selected residents. Each stage of selection constituted a national probability sample. A design objective of the survey was to provide statistical information, of roughly comparable reliability, for each of 18 groups (or strata) of institutions, i.e., six types of facilities by three size categories. In effect, therefore, 18 independent samples were selected and inter- viewed. The basic frame from whnch the institution sample was taken was the 1973 Master Facility Inventory. In general, within each of the 18 strata, institutions were chosen systematically with probability proportionate to their sizes, i.e., the number of beds. Some strata contained relatively few institutions in which case all the institutions in that stratum were included in the sample with certainty. Within selected institutions, residents were chosen in such a way as to (1) yield approximately equal workloads by institu- tion within a given size class and to (2) yield overall sample sizes of about 600 2 residents within each of the 18 strata. The sample of families was chosen by designating, systematically, one-half the sample of residents for inclusion in the study. The sample of institutions was selected through a computer opera- tion; the sample of residents was selected by the survey interviewers on the basis of prescribed procedures, as was the sample of families. The Master Facility Inventory (MFI). The National Center for Health Statistics (NCHS) provided the Bureau with a file of the 1973 MFI from which the sample institutions were selected. The MFI is a comprehensive file of those facilities in the United States providing medical, nursing, personal, residential, or custodial care. The file has two basic components, the hospital portion and the nursing home and other facilities portion. Neither General Research Corporation, which designed the basic model for the SIP sampling procedures, nor NCHS, from whom the file was obtained, made mention of the existence of the hospital component of the MFI at the time specifications were prepared for the selection of the institutions, and, therefore, the institution sampling for SIP was made from the nursing home and other facilities component only. Although this portion of the MFI contained virtually all of the long-term care (average resident stay of 30 days or more) facilities, it has since been learned that there were a number of hospital facilities, mostly psychiatric, which were long-term and were contained in the hospital component. It appears that this oversight may cause the estimate of psychiatric facilities to be understated by as much as two-thirds; however, the MFI universe of nursing homes and 2 In one of the strata, there were only five institutions in the universe; it was decided to sample only 200 residents, an average of 40 per institution, from these facilities. SIP Type Psychiatric Physically Handicapped Mentally Handicapped Children Nursing Homes Other Facilities Total MFI Type Alcoholism, Drug Abuse, Emotionally Disturbed Blind, Deaf, Physically Handicapped Mentally Retarded, Neurologically Handicapped Orphanages, Unwed Mothers, Sheltered or Custodial Care Nursing Homes, Nursing Care Units, Convalescent or Rest Homes, Homes for Aged Extended care units, VA Hospitals, Chronic Disease Facilities Number of Facilities 2,024 224 1,357 2,474 19,449 475 26,003 other facilities adequately reflects virtually all other long-term care institutions. With the above qualifications in mind, the universe from which the SIP sample of institutions was drawn was the 1973 Master Facility Inventory as provided by NCHS. The content of the 1973 MFI in terms of the types of institutions is shown above. These facilities represented a total capacity of 1,680,508 beds, with a resident population of 1,495,066, in 1973. These totals do not, however, include correctional or juvenile detent- ion facilities, excluded from the sampling universe. Such facilities were not included in sample due to the custodial nature of the services offered, as opposed to residential care. The MFI file utilized for sampling purposes had all known duplicate institutions removed. However, some duplication remained, mainly because of the definitional distinction be- tween licensing of facilities and type of care provided, as discussed earlier. Since there was no feasible way to update the MFI file to rid it of duplication arising from licensing practices, it was decided to select the sample from the existing file and untangle any resulting problems during the interview operation Practically, this procedure would have the effect of increasing the number of cases selected in the sample that would have to be deleted as out-of -scope, i.e., duplicates. (It was expected that a few sample institutions would be out-of-scope because they no longer existed, since the MFI file was 1973 vintage.) As mentioned, there were 18 independent strata established for the purpose of sample selection. The size delineations of 1-99, 100-349, and 350 or more beds were deemed to be the most representative of actual differences in the characteristics of what might be termed small, medium, and large size institutions and furthermore, it allowed for a fairly reasonable (though not equal) distribution of beds. The number of sample institutions and expected resident sample size by facility type and size (strata) to be selected is shown on the following page. Psychiatric institutions 1-99 beds 100-349 beds 350+ beds Physically handicapped institutions 1-99 beds 100-349 beds 350+ beds Mentally handicapped Children's facilities facilities 1-99 beds 100-349 beds 350+ beds Nursing Homes 1-99 beds 100-349 beds 350+ beds 1-99 beds 100-349 beds 350+ beds Other Institutions (Chronically ill VA hosp., etc.) 1-99 beds 100-349 beds 350+ beds A total of 928 institutions was initially selected for sample. As mentioned, each of the 18 separate strata was an indepen- dent sample. Further, each stratum was of analytical interest in its own right, which accounts for the decision to achieve comparable sample sizes within each stratum. The sample of institutions was selected systematically with probability pro- portionate to the institution's size, i.e., number of beds. Procedurally, the total number of beds on the MFI was calculated separately for each of the 18 strata and then divided by the desired number of institutions, that is, 75 or 50; the derivation being the stratum "take-every" (TE). A random "start-with" (SW) with a value equal to or greater than .001 and less than the TE was computer-generated for each stratum. The institutions on the MFI file were arrayed geographically by stratum and their cumulative bed size calculated. The institution for which the cumulative bed size equalled or exceeded the SW was selected as the first sample institution. The TE was then added to the SW, and the next institution with a cumulative bed size equaling or exceeding SW + TE was selected for the sample. The TE was then added successively following each "hit" or selection until SW + nTE exceeded 384 cumulative count of bed size for the stratum. This method of selection was applied to all the strata except medium-size other facilities and large-size psychiatric, physically handicapped, children's facilities, and other facilities strata. These five strata were treated as "certainty or self-representing strata", because they each contained so few institutions that all of them were included in sample. The sampling intervals or TE for the within-institution resident selection were computer calculated in conjunction wtih the facility sampling. Except for certainty strata the desired number of sample residents per institution was 8 for small facilities and 12 for the others. For each selected institution, therefore, the facility bed count was divided by 10 (or 15) , to obtain the institution resident selection TE. A randomly generated SW was determined in each institution with a value between zero and the TE. This procedure allowed the resident sample to be self-weighting within each stratum, plus it permitted virtually equal interviewer workloads in all institu- tions of a given stratum. For the certainty strata, the anticipated number of residents to be sampled for the entire stratum was divided into the total bed size for that stratum, producing a stratum TE. The same TE was used in all of the institutions in that certainty stratum. The sample was therefore self-weighting, but workloads by institu- 3 Values of 8 (or 12) were not used because the pretest experience indicated that institutions generally had fewer residents than beds. tion were variable. A separate random SW was generated individually for each institution. The SW and TE values were to be applied to the institution register of residents by the interviewer. A method of subsam- pling was devised for those cases where a greater number of residents was chosen in sample than it was feasible to interview. The maximum number of sample residents to be interviewed in sample institutions from "noncertainty strata" was set at 24, and at 40 for "certainty strata." The reason for the difference in the resident interview ceilings between the certainty and noncertainty strata is due to the limited number of institutions available for interview in the certainty strata. Therefore, a ceiling of 40 resident interviews was imposed to obtain a reasonable number of interviews without overburdening the institutions involved. The certainty institutions were indicated as such on the resident sampling questionnaire (SIP-5), and when the SW-TE generated more than 40 sample residents the interviewer was instructed to call his/her supervisor for subsam- pling instructions. In turn, the supervisor would call the Washington staff who issued the subsampling instructions on an ad hoc basis. A subsampling table was provided in the SIP-5 sampling questionnaire for noncertainty strata institutions. This table provided a subsample SW-TE interval based on the size of the original resident sample and was applied to the sample as originally drawn to reduce the size to, or below, the 24 resident ceiling. Discrepancies of more than 10 percent between the 1973 estimated number of total residents in an institution and the Size (Beds) Small (1-99) Type Psychiatric Physically Handicapped Mentally handicapped Children's Facilities Nursing Homes Other Facilities Number of Sample Institutions 75 75 75 75 75 75 Number of Sample Residents 600-750 600-750 600-750 600-750 600-750 600-750 Medium (100-349) Psychiatric Physically Handicapped Mentally Handicapped Children's Facilities Nursing Homes Other Facilities 50 50 50 50 50 "58 600-750 600-750 600-750 600-750 600-750 600-750 Large (350+) Psychiatric Physically Handicapped Mentally Handicapped Children's Facilities Nursing Homes Other Facilities Total *22 '19 50 f 24 50 "5 600 600 600-750 600 600-750 200 928 10,400-12,500 Indicates that all of the institutions of this size and type were included in the sample with certainty. interviewer count of residents and any deviations in the resident selection process were reconciled on an ad hoc basis through the Regional Office supervisor and/or the Washington staff. The sampling questionnaire contained several questions to ensure that the register or list of residents identified all current, long-term residents and excluded those persons considered to be ineligible (i.e., those not on the register the night before the interview and/or those for whom a bed was not being held). Procedures were also provided which allowed the facility to draw the resident sample for reasons of confidentiality, pro- viding the proper methods were followed and the interviewer was permitted to view the sampling operation without actually seeing the names. In the same vein, if an institution would not divulge the names of residents, the interviewer was instructed to use numbers or letters to identify sample residents. The target sample size for the family sample was in the range of 3,500-4,000 cases. Allowing for attrition due to such factors as non-response and residents without next of kin, it was decided to subsample the resident sample at the rate of one-half for purposes of designating the family sample. Family question- naires were prepared for half of the resident questionnaires included for an institution. The families to be included in sample for a particular institution were determined by the facility control number. If the last digit of the control number was even, all of the even-numbered (serial number) residents' family members were included in the family sample, and conversely for the odd-numbered institutions and residents. Before leaving the discussion of sample selection, some mention should be made of the results obtained from these sampling methods. Of the 928 institutions selected in the sample, 13 were listed more thanonce(duplicated) on the list of sample facilities. Nine of those cases were selected more than once due to the sampling methods employed. This occurred whenever the institution size (number of beds) was greater than the computed TE for the stratum. The remaining four cases were obvious duplicated listings that appeared on the undupli- cated MFI. Thus, the actual number of sample institutions sent to the field for interview was 915. The strata affected by this reduction for duplication were as follows: Multiply Selected Institutions Excluded from Interview (Selection Strata) 4 Physically handicapped (under 100 beds) 2 Physically handicapped (100-349 beds) 1 Other facility (100-349 beds) 1 Psychiatric (350+ beds) 5 Nursing Homes (350+ beds) 13 Total institutions By all accounts, the interviewers experienced no major difficulties in applying the resident sampling procedures cor- rectly. The expected number of residents to be sampled from all institutions was estimated between 10,400 and 12,500 as discussed earlier. The actual number of residents selected in sample from all institutions was, however, only 9,389. This was due to the fact that although 928 institutions were selected initially only 822 were actually utilized for resident sampling for various reasons (see page 00). General The time between the pretest and January 1976, when data collection for the national survey of SIP was scheduled to begin, was spent finalizing the content of the questionnaires and interviewing procedures, developing the office control and clerical edit procedures, and designing and printing all the survey forms. Privacy and confidentiality. During this period, the Privacy Act of 1974 came into effect. This act required that a potential respondent be advised, in writing, of the authorization for and purpose of the survey; how the data would be used; whether compliance was mandatory or voluntary; and, whether there were any penalties if the respondent refused to provide any or all of the information requested. Since there were already plans to send the administrators of the sample institutions and the families selected for interview advance introductory letters advising them of the survey and its confidentiality, the requirements of the Privacy Act were incorporated into these letters. In addition, a statement covering these points had to be designed for the interviewer to give to the sample residents prior to their interviews. The only set of respondents for whom a written statement or letter was not prepared was the staff members; since these persons were responding as employees of the institutions providing information about others rather than themselves. In addition to explaining the purpose of the survey and the confidentiality of the data in the introductory letters and in the handout given to the residents, an introductory statement covering these points was inserted into all of the questionnaires to be read by the interviewers before the actual interview began. The statements read to the staff members and residents also stipulated that their respective answers would not be seen by anyone else; the Bureau of the Census felt this point was particularly important because these respondents might answer differently if they thought the administrator or someone else would see their responses. On the recommendation of the Office of Management and Budget, which is responsible for reviewing all surveys conducted by Federal agencies, the sample resident had to sign a form authorizing the Census Bureau to interview the resident's family, providing informed consent. In the event the resident preferred that we contact a family member other than the one identified in the administrative records, that person was interviewed. In those instances where the resident's family was in sample, but the resident was under 14 years of age or not able to respond to section C past the "screening" questions, the interviewer was instructed to contact the family for an interview without the resident's authorization. In order to safeguard the confidentiality of the data, the interviewer attempted to interview the resident in private; however, in some instances it was necessary or unavoidable that facility staff and/or other residents were present. If the resident expressed any hesitation at or objected to answering the 10 questions in the presence of other persons, the interviewer made every attempt at changing the place of interview to a private area within the facility. If a language or hearing problem existed and the use of an interpreter was necessary to conduct the interview, arrangements were made accordingly. Contacting the family. The pretest results indicated that the family was a valuable source of information; however, the records of many institutions did not have the names and addresses of any family members, or this information had not been updated since the resident's admission to the institution— sometimes a period of 5 years or more. In those cases where the administrative records did not contain the name and/or address of the resident's next of kin or there was reason to suspect that the information had not been updated, the resident was asked to supply that information. All family members for whom a telephone number could be obtained from the institution, the resident, or the telephone company, were telephoned for an interview about 5 days after the introductory letter was mailed to them. If the family member did not have a telephone or preferred not be interviewed over the telephone, a personal visit was arranged for the interview if the interviewer resided within 50 miles round trip distance of the respondent. If the distance between interviewer and respondent exceeded 50 miles round trip, the case was returned to the Regional Office supervisor who transferred it to another of his/her interviewers or to the closest Regional Office to conduct the interview. In some cases the family member could not (from lack of knowledge) or would not (refused) participate in the interview. In these instances, the interviewer attempted to get the name, address, and telephone number of another related person who could be contacted for an interview. Selecting resident sample. The procedures for selecting the sample of residents used during the pretest were revised only to incorporate the proper "start-with/take-every (SW-TE)" values for each sample institution. As mentioned earlier, most of the administrators contacted during the pretest authorized the interviewer to select the sample of residents. In some cases, however, the administrator was hesitant or refused to allow the interviewer access to the names of the facility's residents. Therefore, several alternatives to the sam- pling procedures were developed which would enable the interviewer to conduct the sampling as well as resolve any reservations the administrator might have. 1. If someone outside of the facility had to give approval for gaining access to the facility residents, such as a court or State agency, the interviewer or his/her supervisor was to contact the proper authority and attempt to gain permission. Every effort would be made to gain authority to conduct the resident sampling up to, but not including, a formal petitioning of the court. 2. As mentioned earlier, if the institution would not allow the interviewer to actually see a list of the facility's residents for reasons of confidentiality, a member of the facility's staff could draw the sample from the patient register providing the person conducting the sampling would follow the interviewer instruc- tions for selection and the interviewer could be physically present during the sampling. If the institution would not agree to select the sample according to the instructions provided the interview would be terminated. That is, the facility would not be allowed to make an arbitrary, and therefore biased, selection of residents. 3. If the institution would not provide the full name of residents selected in sample, a letter, number, or the first name only could be used to identify them. Survey Instruments The sequence of and procedures for interviewing in the national survey remained the same as for the pretest. The survey instruments used were: Questionnaires: 1. SIP-1 —institution questionnaire— obtained information about the facility from the administrator. 2. SIP-2— resident questionnaire— a three-part instrument which gathered data pertaining to a sample resident from the facility administrative records, a staff member, and the resident himself /herself. 3. SIP-3— family questionnaire— used to interview the next of kin of the sample resident about the institutionalization of the resident. 4. SIP-5— sampling questionnaire— procedures for selecting the resident sample. Letters: 5. SIP-1 (LD— "Dear Administrator" letter-informed ad- ministrators of sample institutions of the survey and its purpose. 6. S I P-2(L1)— resident information sheet— informed sample resident of the survey: its purpose, uses, and confident- iality. 7. SIP-3(L1 )— "Dear Friend" letter— informed next of kin selected in sample of the survey and its purpose. Complementary Forms: 8. SIP-1 A— occupation complement— duplicate of page 9 of the SIP-1, left with respondents who were unable to complete these items at the time of the initial interview. 9. SIP-4-flashcard booklet-respondent reference cards for answering selected questions in the SIP-1, SIP-2, and SIP-3 forms. 10. SIP-8— sampling flashcard — information card for in- stitution staff selecting the resident sample. The interviewer was also given a handout describing the six types of care, and the corresponding MFI detailed categories, as an aid in classifying the type or types of care offered by the facility. 11 Training An SIP-7 Home Study (self-study) and SIP-6 Interviewer's (procedures) Manual were sent to all of the interviewers, supervisors, and clerks assigned to SIP. The self-study was designed to provide these personnel with an explanation of the survey, the authority under which it was being conducted, and so forth. The use and procedures for each form was described in detail. In addition, each lesson (for the questionnaires) con- tained a "mock interview" which was to be completed on the form itself. The mock interview was designed with programmed answers to the questionnaire items asked by the interviewer. This familiarized the interviewer with the question wording, skip pattern, and related procedures for each of the forms to be used in the survey. Upon completion of the procedures review and mock interviews, the interviewer tested his/her knowledge of the survey concepts by completing a final review test. The home-study was designed to be completed in about 8 hours, including a review of the materials used in the survey, and was distributed a week to 2 weeks in advance of the scheduled classroom training to allow all of the personnel connected with the survey sufficient time to complete the study prior to the training sessions. The SIP Supervisors' Training Session, held on January 5, 1976 in Chicago, Illinois, was conducted by members of the Washington staff. This 1-day session was attended by the supervisory staff assigned to administer SIP from each of the 12 Census Regional Offices. The supervisors were responsible for training interviewers, resolving situtations not covered in the procedures, and advising interviewers on any problems they encountered during the field work. The supervisors were also given a complete explanation of the survey purpose, the guarantees of confidentiality, and the measures taken to comply with the provisions of the Privacy Act (of 1974). This information was especially important to the supervisory personnel because of their forthcoming dealings with reluctant respondents. In addition, the survey concepts and procedures were reviewed during this session. Finally, con- tinuing discussions were held on the types of problems the supervisor might expect and the suggested resolutions of each. Some of the topics discussed included the sampling of residents in institutions with multiple campuses, procedures for handling sample facilities that are administrative offices with no resi- dents, and subsampling of residents. The 2-day interviewer training sessions were scheduled for the remainder of that same week (January 6-9) and/or the following week. There were 348 interviewers trained nation- wide. The interviewers were asked to bring their manuals and completed self-studies to the training session. Any questions about the materials were answered at the beginning of the session (as well as throughout the training). The supervisor used a verbatim training guide which assured that each of the survey concepts and procedures was covered at the appropriate point in the discussion. Several canned "mock" or practice interviews were con- ducted to illustrate and test the interviewers' knowledge of the methods for handling the procedures designed to accomodate the completion of each questionnaire. This training method proved to be the most effective and direct way of alerting the interviewers to the problem situations likely to occur and, concomitantly, the suggested and most effective means of dealing with them. The procedures for the interviewer control and editing (for completeness and accuracy) of the completed forms, as well as their transmittal, were also discussed and explained. All new interviewers hired for the survey were given an extra day of training on general interviewing techniques. At the completion of the training, the interviewers were given their assignments. The forms necessary to complete a sample institution were provided in a packet. Each packet contained institution, resident sampling, resident, and family questionnaires (i.e., the forms necessary for completing a sample institution in its entirety). Several extra (not assigned to a sample facility) packets were provided to each interviewer for use if and when he/she discovered facilities offering more than one type of care. Field Work Three weeks before the sample institutions were contacted for an interview, an informational letter (SIP-1 (L2)) describing the survey content and procedures was sent to all known medical associations, and the chief medical officer or public health commissioner of each of the 50 states. Their cooperation, and the cooperation of their member organizations (institutions) who might seek their advice or guidance was solicited. A "Dear Administrator" letter was sent to all of the sample institutions on January 5,1976. Following their training, but not before January 12, the interviewers began calling the administrators of the institutions in their area for an appoint- ment. The closeout date for completing all phases of the interviewing was tentatively scheduled for February 27. Any major problems which arose were forwarded to the Washington staff for resolution on an individual basis. The majority of the problems concerned the sampling or procedures were of a legal nature. Sampling problems: (1) If the interviewer found discrepancies (greater than a 10 percent difference) in the expected number of residents and the number accounted for at the time of interview, he/she was to determine the reason for the discrepancy if possible and, where increases were substantial, subsampled the residents as necessary. (2) If an interviewer had a "certainty" institution with an initial resident sample of more than 40 cases, the proper subsampling instructions were developed and issued. Legal Problems: Each case was handled on an individual basis in an attempt to comply with the appropriate regulations. Many of these cases concerned alternatives in the method of resident sample selection, which permitted the administrator to guard the confidentiality and privacy of his/her residents while still cooperating in the survey. If a specific portion of a question- naire was objectionable, that part of the interview process was deleted. There were legal problems with some institutions, however, involving funding regulations under which the institution lost its 12 eligibility for funds if information was released about residents of the institution (primarily HEW regulation, e.g. the "Buckley Amendment") or State Privacy/Confidentiality Laws which forbade the disclosure of information about residents in institutions. In each of those instances, we attempted to reach a compromise in the procedures which would permit us to gather at least partial information without violating any regulation(s). 1. Although State Privacy /Confidentiality Laws were mentioned as the reason for noncooperation by a number of facilities, when we attempted to verify whether we were in compliance with these State laws, it was learned that no State law of that nature existed. In fact, in only one of the States checked was there actually a State Privacy Law which affected the survey procedures. In this State, interviewing Statewide was halted until a decision was rendered as to our compliance by the State Attorney General's Office. In that case, the families of all sample residents had to authorize participation before any resident or family information could be obtained. 2. In addition to the legal questions involving the sample institutions, the Census Bureau and HEW received a letter from a private attorney representing a professional health care association (with members who were in the sample of institu- tions) which challenged the overall legality of the survey. After careful research, it was found that the objections raised by the association's attorney were based on incomplete knowledge of the Privacy Act and Section 2825, title 42, USC, and therefore, the survey continued. 3. In cases of reluctant or hesitant respondents, each facility was contacted individually by the regional office supervisor or a member of the Washington staff to discuss its reasons for reluctance to participate. Any questions it had about the survey were answered, as well as to define possible alternative procedures which might allay its doubts about participating. Results of the Data Collection The response rate for almost every set of SIP respondents was greater than was originally anticipated. These results follow. Institutions. The number of institutions originally assigned for interview was 915. Another 37 institutions were discovered as additional sample units in institutions which offered more than one of the six major types of care. As discussed earlier, if an institution offered more than one type of care, each type was treated as if it were a separate facility. Therefore, the total number of sample institutions was 952. Eighty-four facilities were found to be "out-of-scope" during the actual enumeration phase: Number Percent Reason Duplicate sample institutions Sample facility was out-of-business Sample facility offered short-term care only Sample facility was out-of-scope for other reasons (detention facility, administrative office, etc.) 10 1 36 4 28 3 10 84 Total "out-of-scope" Thus, there were 868 sample institutions available for interview. Of those 868, 13 refused to participate at all in the survey, leaving 855 which granted an interview for at least the institution questionnaire (SIP-1). Therefore, the interview rate for the institution questionnaire was 98.5 percent of the eligible institutions. Of the 855 institutions participating in the institution interview, 33 would not grant permission for the sampling of residents. The remaining phases (staff, administrative records, resident, and family interviews) of the survey were entirely dependent on the selection of sample residents and were completed at 96.1 percent of the institutions. Section A (administrative records) of the resident question- naire was completed for at least one resident in 801 institutions, or in 93.7 percent of the participating (855) institutions. The staff-member interview (section B) of the resident questionnaire was completed for at least one resident in 800 (93.6 percent) of the participating institutions. At least one section C (resident) interview was conducted in 585 (68.4 percent) of the 855 institutions. Next-of-kin information was provided by 627 (73.3 percent) of the sample facilities. The figures presented previously do not totally reflect the amount of cooperation given by the administrators. The completion of some phases of the survey was dependent upon the age and/or mental competence of the resident. In addition, there were some cases in which the administrator did not have the authority to permit the interviewer access to the records, but would agree to contact the residents' families for permis- sion. For example, many times in children's facilities, all of the sample residents were under 14 years of age and therefore, no section C interviews were conducted, or family approval was needed to release any data (for those 14 and over) and it was not granted; thus, no resident or (next-of-kin) data could be obtained, although the administrator gave his/her authorization. With these qualifications in mind, the table on the following page shows the number of institutions in which data for a sur- vey phase was not obtained as compared to the number of ad- ministrators who actually refused their authorization. From the 822 institutions permitting the selection of a resident sample, 9,388 residents were sampled. Fifty-one of those residents selected were determined to be ineligible or out-of-scope because during the interviewing it was learned they had either been discharged (prior to being selected) or they did not actually reside in the facility and a bed was not being held for them. No substitution was made for these records; therefore, the number of possible resident interviews was 9,337. Section A of the resident questionnaire was filled from the sample residents' administrative records. This information could be transcribed directly from the records or obtained from facility personnel with access to that data; there were 1,702 section A forms transcribed and 7,344 obtained by personal interview with a member of the records staff, for a total of 9,046 interviews, or a 96.9 percent completion rate. The remaining 291 (3.1 percent) cases were noninterviews, of which 215 (2.3 percent) were refused information by the admini- strator, resident, or his/her family. The other noninterviews (76 13 Completion and Authorization Rates for Survey Phases Number of institutions in which administrators Total number of institutions refused authorization with no data obtained Survey phases Sample section Administrative Records (SIP-2-Sect. A) Staff members (SIP-2-Sect. B) Sample residents (SIP-2-Sect. C) Next-of-kin Information (percent of total) 33 (3.9%) 54 (6.3%) 55 (6.4%) 270 (31.6%) 228 (26.7%) (percent of total) 33 (3.9%) 54 (6.3%) 55 (6.4%) 109 (12.7%) 177 (20.7%) cases or 0.8 percent) had no specific noninterview reason recorded which could be coded. Resident Questionnaire (Section A) Completion Rate Section A Number Percent Interviews 9,046 96.9 Refusals 215 2.3 Other noninter- views 76 0.8 Total 9,337 100.0 Section B of the resident questionnaire was completed in a personal interview with a staff member who had frequent contact with the sample resident. Of the 9,337 possibles, interviews were obtained for 9,036 residents or 96.8 percent of the sample. There were 301 (3.1 percent) noninterviews, of which 195 (2.1 percent) were refusals by the administrator. The other 106 noninterviews comprised only 1.1 percent of the total workload and generally were not completed because the resident refused or the family would not allow access to the resident's records. Resident Questionnaire (Section B) Completion Rate Section B Number Percent Interviews 9,036 96.8 Refusals 195 2.1 Other noninter- views 106 1.1 Total 9,337 100.0 Section C of the resident questionnaire obtained informa- tion directly from the sample resident. There were 1,712 (18.3 percent) of the 9,337 sample residents who were under 14 years of age and, therefore, not eligible for interview. Of the 7,625 residents 14 years old and over, 4,622 (60.6 percent) were interviewed. Of the noninterviews, 302 (4.0 percent) residents were unable to "pass" (answer three or more of) the screening questions; 2,456 (32.2 percent) cases were those in which the administrator refused permission for the sample resident to be interviewed, and in 1,330 (17.4 percent) of those cases the administrator was unwilling to permit an interview because of Section C Number Interviews 4,622 Failed screening 302 Administrator refused 2,456 Family refused 114 Other noninter- views 131 the resident's inability to respond or incompetency. The remaining noninterview cases were due to other reasons. The response rates for section C were: Resident Questionnaire (Section C) Completion Rate Percent 60.6 4.0 32.2 1.5 1.7 Total 7,625 100.0 One-half or 4,668 of the residents were eligible to have families selected for interview, of which 89.5 had known next of kin; the remaining 10.5 percent or 491 residents were out-of-scope for the purposes of the family sample. Of the 4,177 possible interview cases, 3,327 or 79.7 percent were completed. There were 2,876 (68.9 percent) telephone inter- views and 451 (10.8 percent) personal interviews. The response rates and noninterviews were as shown on the following table: Family Questionnaire Completion Rate Percent of total Family Questionnaire Number workload Interviews Family Refused Temporarily Absent Deceased Unable to Contact "Other" Noninterviews Administrator Refused Resident Refused Court refused Unable to Respond Other Reason Total 3,327 79.7 112 2.7 10 .3 13 .3 190 4.5 294 7.0 122 2.9 13 .3 17 .4 79 1.9 4,177 100.0 14 Of particular interest in the results of the family sample is the number of residents with family or next of kin. It was originally estimated in the planning stages for SIP that approxi- mately 30 percent of the residents would have no next of kin and, therefore, would be "out-of-scope" when selected for the family sample. Data Processing The interviewers and the regional office staff edited the forms for accuracy and completeness prior to transmittal to the Census processing center. Once the forms were transmitted for processing, the documents for each sample facility were rechecked for accuracy and completeness. Since each of the sample institution's forms were prenumbered serially and arranged in a "packet," missing forms could be readily detected. Noninterview institutions were reviewed to determine if any further follow-up efforts would be effective in converting them to interview status. Detailed instructions were prepared for each item which required clerical editing. In addition, a tally was prepared from about 10 percent of the questionnaires for questions with an "Other— specify" answer category to determine if that category could be reduced by creating additional specific categories. Instructions were then prepared for those items to be recoded and the appropriate recode categories for each were provided. The total number of sample residents and families per institu- tion was verified for accuracy. In addition, the individual resident and family forms were matched to verify that the correct serially numbered form was used for the appropriate sample person and that they were eligible respondents. Follow- ing the check-in and clerical processing of the forms, they were arranged in serial-number order by institution for further processing. The questionnaires were keyed on Entrex (keying) machines. These machines were programmed to range check each data field in the questionnaires to determine if an entry was "in range." Improper entries could thus be corrected in the keying phase of processing directly from the survey documents rather than in the computer edit phase where such (out-of -range) entries would need to be blanked or made "not answered." Each question had a specified number of positions in a particular field in which information could be keyed, as well as the appropriate range of acceptable entries. That is, keying was performed in a fixed field format. A data file (keyed) was received from the processing unit on June 8, two months after the termination of field work. The computer editing of the file began immediately after receipt of the data file and was completed in two basic phases which were performed over a period of 4 months. A preliminary edit (preedit), which checked certain critical items on each of the questionnaires for accuracy and complete- ness was the first of the computerized operations performed on the file. If out-of-scope or blank entries were found for these items, the original questionnaires were checked to determine the correct entry and the file adjusted accordingly. The items included in the preliminary edit were: the type of care provided by the institution, its bed size, the total number of residents by sex; the sample residents' age, sex, marital status, and race; and the family respondent's relationship to the sample resident. The second computerized editing phase was the consistency edit. In this edit, each data item was range checked and checked for consistency with each of its related subparts. Items which were internally inconsistent were corrected, if possible, to agree with the primary data obtained in its subparts. For example, if a lead item was a "yes" or "no" general response and it was blank or inconsistent with the detailed items (more specific than the lead item) which followed, the lead item was changed to be made consistent. In addition, if there were data items which were blank and could be answered by referring to completed items in the same questionnaire, they were filled. However, answers were not compared or filled between the different survey questionnaires, except for basic demographic character- istics such as marital status and education. Items which should have been filled, but could not be because of the lack of coresponsive data items, were coded "N/A" or not ascer- tainable. Blank items or items which should not have been answered because of the skip pattern were coded as "blank" or "not in universe". No imputations or allocations were made for missing data items. Nor were entries substituted from the MFI file. After the data file was edited, the tabulation variables were created for the questionnaire items. The tables were produced using a standard Census Bureau table generation program; weighted and unweighted (unit) counts for each of the tabulation variables were reviewed for accuracy prior to the production of the entire table package. Estimation Procedure The estimation procedure employed for this survey was straight- forward. It consisted basically of inflating the sample counts by the reciprocal of the probabilities of selection, with an adjustment for nonresponse. A more sophisticated model, using a ratio adjustment to known, independent counts of institutions or institutionalized persons, was ruled out of consideration on the grounds that there were no valid or up-to-date independent estimates deemed acceptable. Because of the nature of the sample design and tabulation needs, separate inflation methods (weighting) were used for each of the three components of the survey, i.e., institutions, residents, and families. Institution weights. The sample of institutions was selected from 18 independent strata (6 care types by 3 size groups). Within a stratum, institutions were selected with probability proportionate to their 1973 size. The weight for each institution was calculated based on the inverse of its probability for selection and a noninterview adjustment. The following formula was used to determine the basic weight (inverse of the probability for selection) for a given institution: Number of beds (1973 MFI) Number* of sample institutions selected in stratum = Basic Weight *Either 75 or 50. Sample institution bed size (MFI) 15 Note: The basic weight for "certainty" (self-representing) strata was 1.0, as all institutions in those strata were included in sample. Thus, the probability for selection was unity. The noninterview adjustment factor was computed as follows: Number of sample institutions interviewed in stratum + Number of refusal institutions in stratum Number of sample institutions interviewed in stratum Noninterview Adjustment This factor, when multiplied by the basic weight, gives the final institution weight. (Base weight X Nonresponse adjustment = Final Weight) Institutions discovered during the survey (not listed on the MFI) and those offering more than one type of care (each type interviewed as though it were a separate institution) were weighted utilizing the same final weights as the parent facilities to which they were associated. Resident Weights. The residents selected from each sample institution were weighted together in the sense that the weights for all sample residents within each sample institution were identical. The weights assigned to residents from different sample facilities varied, of course. The resident weight is the product of three factors— the institution weight, the inverse of the probability of within- institution selection, and a noninterview adjustment. The follow- ing formulas illustrate that procedure: Number of beds in stratum (MFI) v 1 Number of sample institutions to be selected in stratum Sample institution bed size (MFI) Number of institutions inter- viewed in stratum + Number of noninterviews Number of institutions interviewed in stratum = Institution Component of Resident Weight Note: This is the same procedure used for computing the institution weight. Institutions not permitting the selection of a sample of residents were added to the number of noninterviews, however. Number* of persons to be selected within institution Number of beds in institution (1973 MFI) Within-institution "take every" *Either 10 or 15. Number of sample resident interviews in institution Number of noninterviews (SIP-2/Sect. A) Number of sample resident interviews in institution Noninterview Adjustment The product of these three weighting components is the final resident weight applied to each of the sample residents in an institution. Family Weight. One-half the sampled residents were eligible to have a family selected in sample. Again, the family weight is the product of three factors— the person (resident) weight, the value 2, and a noninterview adjustment. The resident weight used in this calculation is the same weight applied to the residents. That value was multiplied by 2, as only one-half the residents were eligible for the family sample. The resulting value was then multiplied by a noninterview adjustment as follows: Resident weight X 2 Number of residents eligible for family w sample (i.e., those with next of kin) in stratum Number of completed family interviews for stratum = Family Weight Note: The noninterview adjustment was calculated on a stratum basis rather than by institution because the family sample was only half the size of the resident sample, and moreover, some of those selected had no family; therefore, the size of the family sample would have been prohibitively small for separate noninterview adjustments by institution. Thus, all families within a stratum received the same noninterview adjustment. Publication After the file was edited, recoded (tabulation variables), and weighted, the data tables were produced. The tables are included in a publication prepared by the Bureau of the Census. HEW (the sponsor) received a copy of the tables and a data tape file of all of the institution, resident, and family information. The data file prepared for HEW had all information which might identify an institution or person removed. That file and its documentation can be purchased at cost form the Bureau of the Census by contacting: Larry W. Carbaugh Data User Services Division Bureau of the Census Washington, D.C. 20233 Reliability The final discussion topic of this report deals with the type and magnitude of error in the SIP data. Since the SIP estimates are based on a sample, they may differ somewhat from the results that would have been obtained if a complete census of institutions, residents, and families had been taken using the same forms, procedures, and interviewing staff. As in any sample survey, the results are subject to errors of response and reporting, as well as to sampling variability. The standard errors or variance associated with the data are included with the published report of the SIP results (P-23 series). The standard error, as calculated, will include sampling error or variability, and some portion of the measurement error or variability. It will not, however, include any measures of systematic biases that may be present in the data. PGM 1 | Appendix A NOTICE - Your report will be held in strict confidence and will be seen only by sworn Census employees and may be used only for statistical purposes. O.M.B. No. 4I-S75070; Approval Expires December 31. 1976 FORM SIP-1 (10-1 -75) U.S. DEPARTMENT OF COMMERCE BUREAU OF THE CENSUS ACTING AS COLLECTING AGENT FOR THE U.S. DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE INSTITUTION QUESTIONNAIRE SURVEY OF INSTITUTIONALIZED PERSONS Interviewer name 'Code a. Name of respondent Position Telephone (Area code, number, extension) b. RECORD OF CALLS Date Time a.m. p.m. a.m. p.m. a.m. p.m. a.m. p.m. c. RECORD OF INTERVIEW Began a.m. p.m. Ended a.m. p.m. Date completed e. Description of contact INSTITUTION (oon 1 Q Interview obtained 2 Q Included in interview of other facility - Name of facility 3 Q Refusal - Explain a, Q Unable to contact - Explain 5 □ Other - Specify RESIDENT (002) 1 □ Sample selected 2 Q Access to files refused — Specify d. Appointment made y Date Time a.m. p.m. Room number f. Number of SIP-2's attached INTRODUCTORY STATEMENT This survey concerns the characteristics of long-term care facilities and schools as well as the persons residing in institutions - the cost of their care, the services they receive, the impact of their institutionalization upon the members of theirfamilies, and so forth. After asking you some questions about this facility, I would like to select a sample of the residents in this institution. It maybe necessary to obtain some information from your records concerningthe payment for their care and the name and address of a family member we can contact. In addition, I would like to talk to each of the persons selected for the sample as well as to staff members who have daily or frequent contact with the sample persons. The information you provide is confidential and will be seen only by Bureau of the Census em- ployees. Neither this institution, its staff, nor the sample persons will be identified to anyone. Nor will information obtained from this institution or its staff members be divulged to the sample persons or members of their families. The data we collect in this study will be used for statisti- cal purposes only. I ■<— Mark (X) if more than one questionnaire completed at sample institution. If extra unit interviewed, enter control number of original sample institution. PHONE INFORMATION TO OFFICE IMMEDIATELY AFTER INTERVIEW. Control number 16 17 la. What type of care is provided by this facility? (004) ( !© 1) s 2) b. How long has this facility been in operation in this specialty area? !® Years o Q Less than one year SHOW FLASHCARD © 2. Please look at this card and tell me what type of facility this is. (007) 1 r~J Nursing home (including extended care facilities and skilled nursing homes) (Mark (X) only one) 2 f~J ECF unit of a hospital 3 [~ J Nursing care unit for retirement center 4 r - J Convalescent or rest home 5 Q] Home for aged 6 [~J Sheltered or custodial care home 7 [~ J Orphanage or home for dependent children a [~ J Home for unwed mothers RESIDENT FACILITY OR SCHOOL FOR THE - |® 9 □ Blind io □ Deaf n [~J Emotionally disturbed 12 [~J Mentally retarded 13 Q Other neurologically handicapped persons 14 [~J Physically handicapped RESIDENT TREATMENT CENTER FOR - © 15 f - J Alcoholics 16 Q Drug abusers 17 f~J Other facility - Describe. CHECK ITEM A (008) 1 r~J Two or more types of care (question la) provided by facility. Complete separate questionnaires for each type of care. Place an "X" to the left of the category in question la which is the type of care described in THIS questionnaire. Notes FORM SIP-1 (10.1.7B) Page 2 18 3a. Does this facility have more than one campus which offers this type of care? (009) 1 □ Yes - How many?v □ No -SKIP to 4a b. What is the name and location of the other (each) campus? (1) Name Address (Number and street) City State (2) Name Address (Number and street) City State (3) Name Address (Number and street) City State (4) Name Address (Number and street) City State (5) Name Address (Number and street) City State c. Does (name of sample facility) use the same Personnel Office jointly with one or more of these campuses? (oTj) 1 □ Yes 2 □ No - SKIP to Check Item B d. What other campus shares the use of this office with (name of sample facility)? Name(s) (1). (2) (3) CHECK ITEM B (bli) 1 Q "Yes" in 3c — Questionnaire pertains to sample facility and campuses listed in 3d. 2 Q "No" in 3c - Questionnaire pertains to sample facility only. FORM SIP-I (10-1 -75) Page 3 19 4a. Is this facility operated for profit? !@ 1 □ Yes 2 □ No - SKIP to Ac b. Is it owned by one individual, a (014) 3 1 1 Individual ^ 4 [~J Partnership partnership, or a corporation? 5 r~ J Corporation . SKIP ' to 4d 6 [~J Other - Specify^ c. Who operates this facility? FEDERAL GOVERNMENT > (Mark (X) only one) (Olj) 11 Q U.S. Public Health Service 12 [~J Veterans Administration 1 3 | Armed Servi ces 1*| | Othpr - Specify NON-FEDERAL GOVERNMENT (015) 1 5 □ State 16 r~J County 17 □ City 18 \~J City-county 19 [~J Hospital district 20 Q Other - Specify > © 21 □ CHURCH RELATED 22 □ NONPROFIT CORPORATION ^QOTHFR - Specify ► SKIP to 5o d. Is this facility a member of a group of facilities operating under one general management or general ownership? © 1 DYes 2[~J No 5a. What is the average length of time residents (OlT) 1 I I Less than I month stay in this facility? 2 | | I— 6 months 3[]7-l2 months 4 r~ J I —3 years 5 r~ J 4—6 years e n 7_| ° y ears 7 | | I I -15 years 8 r~ J More than 1 5 years^ . SKIP ''to 5c b. Is there any unit in this facility that has an average length of stay of more than 30 days? (CH?) 1 f_~J Yes - Continue interview; state that this survey vw'// deal ONLY with residents in the /ong-term-care unit - SKIP to 6 2 □ No - Thank respondent and END INTERVIEW c. Is there any unit in this facility that has an average length of stay of less than 30 days? (019) 1 □ Yes - Exclude this unit from the interview 2[~J No FORM SIP-1 (10-1-75) Page 4 20 6. Does your facility accept both mal e and fema e @ in Both males and females residents? 3D Males only Females only 7a. Does your facility accept persons including infants and children? of a II ages © «□ Yes - SKIP to 8 b. *n No What is the minimum age accepted ? (022) Ypar* c. on No minimum age What is the maximum age acceptec ? (023) Years on No maximum age 8. What is the total number of beds regul for residents? INCLUDE all beds set arly ma up and ntained staffed for use whether in use by resident time, or not. Do NOT include bed s at the present > used by staff or owners, or beds used exclusively or emergency (024). Beds purposes, solely day care, or sole y n ght care. 9. How many rooms for residents does th is facil ty have that contain - Rooms ;© ® j® 2 beds? . 5 to 9 beds? !® !© SHOW FLASHCARD @ 1© nQ Geographic location 10a Which of these reasons describes why people chose this facility? (Mark (X) all that apply) i * 2Q 3D *n en ?n «n 20 □ Level and type of treatment provided Care without charge or at reduced cost Only facility providing required care treatment Assigned by court Church or religious affiliation of facility Recommended by physician Recommended by family or friends Recommended by welfare, family services, or other public agency Other - Specify b 88 □ Don't know If more than one reason marked in What is the MAIN reason this faci 10c ity . ASK - is chosen? i® FORM SIP- I (10- 1-78) Page 5 21 11a. What proportion of the residents has i (032) ° □ None - SK ' P to 1 1 C been assigned or referred to this j , r— j LeS s than 25 percent facility by a legal agency? 7 7 y M 7 2 □ 25-49 percent 3 Q 50-74 percent i 4 Q 75 percent or more 5Q All b. Are these residents under the custody 1 (033j) 6 CH Yes of the court? ] 7 HI No c. What proportion of the residents has 1 (034") rn None been assigned or referred to this ! ^— ' , — , , . ->,- • .,.. l x -i 1 Less than 25 percent facility by a family services or I ' — ' r welfare agency? 2 [~J 25-49 percent 3 FJ 50-74 percent 4 Q 75 percent or more I 5 □ All 12a. Is this facility accredited by any professional organizations such as the ' Joint Commission on Accreditation of , (035) 1 Q Yes Hospitals, the American Association of Psychiatric Clinics for Children, 2 [J No - SKIP to 1 3a and so forth? I b. Which organization(s) is it accredited by? I Name of organization c. When were you last surveyed for accreditation by (name of organization)? Month 1 Year ® ® 19 (1) © @ 19 (2) i(040) © 19 (3) © © 19 (4) 13a. Has this facility had to make changes (^) 1 Q Staff/patient ratio in any of the following during the past v_y two years because of statutory or i * 2 □ Recertification of patients regulatory requirements? (Read) ► 3 r— ] Recertification of physical facilities (Mork (X) all that apply) 4 r-j Recertification of staff 5 Q Occupational composition of staff 6 Q Anything else - Specify Q None of the above - SKIP to 14a b. What was the source of the change(s)? (j^ 1 Q Social Security /Medicare Program (Mark (X) a/I that apply) j # 2 □ Medicaid Program 3 □ Court 4 Q State agency 5 Q] Supplemental Security Income Program 6 □ Other - Specify FORM SIP-I (10-1-75) Page 6 22 | ~ PGM 2 SHOW FLASHCARD © 14a. Which of these activities are available for residents of this facility to participate in? After activities are checked, ask 14b and 14c for each marked activity. (1) Go shopping [~] b. How often do residents of this facility (read marked categories)? c. Do the residents usually (type of activity) at this facility or somewhere else? Once a month or more often Less often than once a month At this facility At another location Both (046) * 1 □ 2D 3D 'D = D (2) Go to a beauty or barber shop (3) Go swimming, bowling, dancing □ □ ® * 'D 2D 3D «D *D (048) * ,□ 2D 3D *D *D (5) Play cards, bingo, or other games \~] (6) Attend get-togethers, parties, group conversations © * in 2D 3D «D sD @>* !□ 2D 3D *D 5D © * in 2D 3D *D *D (8) Attend religious services or church related activities (9) Attend sporting events (10) Attend arts and crafts classes or workshops (11) Attend classes, lectures, exhibits, fairs (12) Attend meetings of clubs, committees, and councils (13) Perform work/service for pay or as a volunteer . . . □ □ □ □ □ □ □ a □ □ □ ® * '□ 2D 3D *D 5D © * in zD 3D *D 5D © * in 2D 3D *D *D © * in 2D 3D *D *D © * in zn 3D *D *D ©) * 1 □ 2D 3D *D 5D © * 1 n 2D 3D 4D *D © * 1 □ 2D 3 *D *D ©) * 1 □ 2[ ] 3D *□ *D © * i □ 2D 3D 'D 5 D © °n 15a. Do most of the residents have access to the grounds of the facility? © in Yes ^^ 2[]No- SKIP to 16a b. Is supervision generally required for the residents who are using the grounds of the facility? (064) 3 DYes 4[]N0 16a. Does this facility keep a waiting list of persons to be admitted when a bed becomes available? © 1 n Yes 2[] No- SKIP to Ha b. How many people were on this waiting list last night? ©) People o n None c. Do you provide any services to the persons on this waiting list? (067) in Yes v -' 2 □ No - SKIP to 17 a SHOW FLASHCARD @ d. Which of those services do you provide to persons on the waiting list on a day-care or outpatient basis? (Mark (X) all that apply) (068) 1 1 n Meals (at least one meal dai ly) 12 n Nursing care, health referral services 13 n Physical or occupational therapy 14 n Recreational activities, use of grounds 15 n Transportation and/or escort services 16 n Homemaker or chore services 17 n Visiting or telephone check services 18 n Elementary or secondary education program 19 n Special education program 20 n Professional counseling ?1 n 0t her - Specify FORM SIP- I I 10- 1-7BI Page 7 23 17a Does this facility provide any services to ® 1 □ Yes persons who are not on a waiting list and are not residents of this facility? 2Q No - SKIP to 18a SHOW FLASHCARD @ (m) 1 1 □ Meals (at least one meal daily) b. Which of these services do you provide * 12 [~J Nursing care, health referral services to these persons? 13 | | Physical or occupational therapy (Mark (X) all that apply) 14 [~J Recreational activities, use of grounds 1 5 [~J Transportation and/or escort services 16 [~J Homemaker or chore services 17 [~ J Visiting or telephone check services 18 r~ J Elementary or secondary education program 19 [J J Special education program 20 [~J Professional counseling 21 □Other — Specify 18a. Was the oldest building on this campus originally ® 1 □ Yes - SKIP to 18c constructed for use as a facility for the type of service b. you are now providing to a majority of residents? 2 | | No What was the original purpose and use of this building? (Mark (X) main use) ® 1 [~1 Private home (single family dwelling) 2 [~J Duplex 3 j - ~J Apartment house (5 or more units) 4 □ Hotel or motel 5 r~J Hospital 6 [~J Schoo 1 7 □ Other — Specify c 8 □ Don't know How many buildings does this facility have? © 1 QOne - SKIP to I8e d. Number How many of these buildings are used for sleeping? e. (074) Number How many of these buildings are more than 50 years old? (075) Number f. o [~J None How many of the buildings on this campus have been renovated or remodeled since 1970? (076) Number g- o [~J None How many buildings have been built since 1970? (077) Number h. o [~J None Is there an infirmary with two or more beds on ® !□ Yes j the campus of this facility? 2[7J No Is there a nurse on duty 24 hours a day? (079) 3[~J Yes i- 4[~J No Is there a doctor on duty or on call (080) 1 □ Yes 24 hours a day? »□ No FORM SIP-1 ( 10-1-75) Page 8 24 19a. For each of the following occupations or positions, please tell me the number of employees this facility employs in each category. Count each employee only once, in the occupation at which they spend most of their time. You are to include full-time and part-time employees, as well as persons who volunteer their professional services. However, exclude persons providing a service for a fee. Ask 19b— d for each entry in 19a before continuing with next occupation. b. Are the services of this (these) (read marked categories) usually provided on the grounds of this facility or at another location? c. Are the services of this (these) (read marked categories) usually provided as part of the basic charge or as a special or extra charge? d. How many of these persons are licensed? I~ PGM3 + | How many Occupations i full time? How many part-time? How many volunteers? At this facility At another location Basic charge Extra charge Number Administrator and Assistant Administrator 01 'D 2D 3D *□ Program Director 02 i 1 r ~ 2D 3Q 4 ~ , Physicians (M.D.'s other than psychiatrists) 03 [_ 1 □ ^n 3 r~j *D Dentists 04 '□ 2D 3n *D Registered nurses 05 [ > '□ 2 D 3D *D LPN or vocational nurses 06 ' 1 □ 2n 3D 4 D Nurse's aides, orderlies, i student nurses, and attendants. ... 07 '□ 2D 3D ^ Dieticians and nutritionists 08 ' 1 n 2J | 3D C Psychologists 09 'D 2 D 3D *D Psychiatrists 10 |_ 1 Q 2~ 3 n «D Psychiatric aides 11 [_ 'D 2D 3 D 4 n Interns or other professional medical residents (residency) .... 12 i 'D 2D 3D *□ Social workers 13 1 q 2 I I 3D 4D Occupational therapists and assistants 14 i 'D 2 D 3D *D Physical therapists and assistants 15 [ 'D 2Q 3 n 4 r~ Speech therapists J and audiologists 16 'D 2D 3D 4Q Recreation therapists 17 i 'D 2D 3D 4 ~ Activities directors 18 i 'D 2D 3D 4 Teachers 19 i 'D 2D 3 4 D Classroom and teacher aides 20 1 n 2Q 3D 4 D Other professional and technical personnel (such as pharmacists, etc.) 21 i '□ 2D 3D 4 D Kitchen workers; laundry, housekeeping, and maintenance personnel 22 000 'D 2 [Z 3 D 4 n All other personnel (such as secretary, file clerk, chauffeur, etc.) 23 000 'a 2D 3D 4 D FORM SIP-1 i 10-1-78) Page 9 20a. Does this facility use the services of volunteers or other individuals for which there is no charge to the facility? Do not include persons who volunteer their professional services. PGM 4 ID Yes 2Q No - SKIP to 2/o 25 b. Do as many as 10 volunteers work here every weekday? 3 □ Yes - SKIP to 20d <*□ No c. Do as many as 15 volunteers work here at least once a week? (083) 5 [J Yes 6 □ No d. How many volunteers work here at least once a month? .Volunteers e. How dependent is this facility upon volunteer help? (Read) 1 Q Very dependent 2 Q Somewhat dependent 3 Q Not dependent at all f. What kind of work is done by most of the volunteers? 4 Q Office work/ library 5 Q Help with care of residents 6 Q Other - Specify } g. Are most of the volunteers of a certain age group or members of a particular organization? 1 □ Yes 2[U No - SKIP to 21a h. Which? *□ Age 4 Q Organization 5 □ Both 21a. Do the residents of this facility do any assigned work or maintenance for therapy or treatment? ) 1 □ Yes 2 □ No - SKIP to 22a b. How many residents participate in the assigned work or maintenance? .Residents c. Do these residents receive any monetary reimbursement for this work? (m) 1 □ Yes 2QNo -SKIP to 22a d. How is this paid to the residents? (g) 3 □ Cash 4 Q Credited to personal account 5 Q Deducted from bill 6 Q] Reimbursed in-kind 7 Q Other - Specify Notes FORM SIP-1 < 10-1-78) Page 10 26 22a. Are the residents allowed access to writing i(093) 1 CZ Residents too young or unable to write materials, postage and so forth, for I — correspondence? 2 \~\ Yes 3Q No b. Are the residents permitted the use of i(094) 4 CZl Yes the telephone upon request? *□ No c. Are the residents allowed visitors? '(095) 1 CZ Yes 2[]No d. Are the residents allowed access to l(096) 3 CZl Yes legal counsel? I «□ No If "No" in 22a, b, c, or d, ASK; otherwise SK/P to 23 i e. Are there written rules, policies and/or IVLIV — , procedures regarding these restrictions? , , ,V S S ] 6 □ No -SK/P to 23 f. Who informs residents concerning any restrictive !(098) 1 ZH Staff policies to which they may be subject? I^ — I * (Mark (X) all that apply) i 2 [_J Superintendent or administrator 3 Q Someone from outside the facility 4 □ Other - Specify. ¥■ 5 | Residents unable to understand policies because of age and/or condition 23. Which of the following criteria are used !(099) 1 CZl Severity of condition to determine to which ward or cottage i — a resident will be assigned? (Read) ► 2 I — I Aqe (Mark (X) all that apply) 3D Sex 4 Q Place of residence 5 Q Family income I 6 Q Education 7 Q Any other factor - Specify , 24. Who has the authority to consent for unusual ! (Too) 1 CZ Superintendent or administrator of this facility or hazardous procedures, such as surgery, I convulsive therapy, and so forth? ] * 2 □ Outside guardian (Mark (X) all that apply) 3 | Patient's family 4 Q Patient 5 Q Each situation is handled individually under court order 6 Q] Other - Specify * FORM SIP-I I 10-1-78) Page I I 27 25a. Does this facility conduct a periodic review of l (lOl) 1 d ^ es each resident to determine his/her suitability ' for continued residence? 2 | | No — SKIP to 26a b. How often are these reviews conducted? ["H Discretionary I (in?) Months c. Do these reviews include an evaluation of I (103) 1 \~\ Yes legal competency? j 2H No i 3 Q Don't know d. Do these reviews include an evaluation of I (104) 4 CD Yes the guardianship needs of the resident? 1 — 8Q No i 6 CD Don't know e. Are notices of these reviews sent to persons ] (\0b) 1 CD ^ es outside the facility who are interested in I the status of the residents? 2 | | No 3 Q Don't know f. Do interested persons from outside the facility j U06) 4 CD Yes participate in the review process? I 5 □ No 6 CD Don't know 26a. Has anyone in this facility been designated to assist ! 007) ' 1 1 Yes residents and their families in planning for discharge? i 2 □ No - SKIP to 27a b. Which staff position has this responsibility? I (loi) 8E Posirinn ] Don't know 27a. Does this facility provide intermediate care before | (l09) ' EH Yes final discharge, such as foster care or half-way ' houses? 2 □ No - SKIP to 28 b. How many residents are in each of these programs now? (Read) -*■ (1) Foster care ,....! (jin) Residents o Q] None (2) Half-way house | (TTT) Residents o Q None (3) Small group quarters i (ijT) Residents o □ None (4) Other care I /rr^ Residents o Q] None Notes FORM SIP-1 (10- t-78) Page 12 28 I ~ PGM 5 28. Does this facility provide outpatient care or supervision for residents after discharge? © 1 □ Yes - What kind?, © 2Q No 29a. Does this facility participate in the Medicare (Title XVIII) Program? © in Yes 2 □ No - SKIP to 30a b. How many beds are certified for Medicare? ©. Beds o □ None - SKIP to 30a c. How many of these certified beds were occupied by Medicare patients last night? ©• x □ All o Q None .Beds 30a. Does this facility participate in the Medicaid (Title XIX) Program? 1 □ Yes 2DNo -SKIP to 31a b. Does this facility have any skilled nursing beds? @ sOYes 4 □ No - SKIP to 30e c. How many of these beds are certified as skilled nursing beds for Medicaid? ©■ Beds x n Al1 o □ None - SKIP to 30e d. How many of these certified beds were occupied by Medicaid patients last night? x □ All o Q None Beds e. Does this facility have any intermediate care beds? © in Yes 2 □ No - SKIP to 31a f. How mqny of these beds are certified as intermediate care beds for Medicaid? Beds x □ All o □ None - SKIP to 31a g. How many of these certified beds were occupied by Medicaid patients last night? © x □ All o Q None Beds 31a. How is this facility financially supported? (Mark (X) all that apply) © 1 □ Church 2 rj State-supported 3 Q Funds from Medicare 4 Q Funds from Medicaid 5 Q Funds from other government program — Specify 6 Q Private donations 7 Q Fees for residents care 8 □ Other - Specify If more than one source in 3 1 a, ASK — b. Which of these is the main source of financial support? FORM SIP- I ( 10-1-75) Page 13 29 32a. On the average how much do you charge for food, lodging, and the basic care provided by this facility? ® 00 per 1 □ Week 2 Q Month 3 □ Other - Specify | | No charge is made b. How much does it actually cost this facility to provide this basic care to a resident? 00 per 1 □ Week * 2 □ Month 3 □ Other - Specify | | Don't know 33. Who receives payment of charges for an individual resident's care — this facility, a private agency, a government agency, or someone else? (Mark (X) only one) © | | This facility | | Private agency 7 Government agency | | Other - Specify 34a. Does this facility maintain individual resident accounts for spending, savings, and so forth? ® '□ Yes 2 □ No - SKIP to 34d b. What types of accounts are maintained for residents? (Read) *~ (1) Personal spending (pocket money) (2) Savings c. What is the maximum allowed in the account? x [J J No maximum 00 © 00 x [~J No maximum (3) Burial ®s 00 x (7 J No maximum (4) Other - Specify. x [~J No maximum 00 d. How many residents have a job at the facility or elsewhere for which they receive pay? Do not include persons doing assigned work for treatment or therapy. ©• o [~J None Residents e. Are the residents expected to pay for anything out of their pocket money or earnings such as clothes, entertainment, and so forth? (Mark (X) all that apply) @ i □ Yes - What? * 2 □ Clothes 3 [~J Entertainment 4 [~J Personal expenses 5 [~J Other - Specify 6 □ No That's all the questions I have for you now. I have a statement of authorization I would like you to sign which will notify your staff members that I have your permission to interview them and to work with some residents' records for the purposes of this survey. THANK RESPONDENT FOR COOPERATION. FORM SIP-1 (10-1.75) Page 1 4 FORM SIP- I ( 10- 1-75) Page 15 31 ADMINISTRATOR AUTHORIZATION FORM FROM: Administrator TO: Authorized Staff Members SUBJECT: Bureau of the Census Access to Facility Records and Personnel Authority is hereby given to. , of the (Name of interviewer) Bureau of the Census, to have access to the following facility records, residents and/or staff members for the purposes of the Survey of Institutionalized Persons: Mark (X) all authorized- I I Patient Register | I Administrative Records | I Sample Residents LJ Staff members providing care or supervision to sample residents I I Next of kin information I have been inTormed that all information which would permit identification of the individual will be held in strict confidence, will be used only by persons engaged in and for the purposes of this survey, and will not be disclosed or released to others for any purpose. Signature of Administrator. Date Name of facility FORM SIP-1 (10 1-75) Page 16 6USGPO: 1975 — 657-674/28 PGM 1 I O.M.B. No. 4I-S75070; Approval Expires December 31, 1976 NOTICE - Your report will be held in strict confidence and will be seen only by sworn Census employees and may be used only for statistical purposes. I FORM SIP-2 (10-1 -75) U.S. DEPARTMENT OF COMMERCE BUREAU OF THE CENSUS ACTING AS COLLECTING AGENT FOR THE U.S. DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE RESIDENT QUESTIONNAIRE SURVEY OF INSTITUTIONALIZED PERSONS Interviewer name Code I. TRANSCRIBE FROM RECORDS a. Name of resident c. Date of birth (Mo., day, yr.) e. Marital status (004) 1 □ Married 2 Q Widowed 3 [^] Divorced 4 Q Separated 5 \^} Never married D. DESCRIPTION OF INTERVIEW (Mark (X) appropriate category for each section) b. Race © 1 2 Wh,te £ Section A - ADMINISTRATIVE (009) ' CH Transcribed from records 2 Q Facility employee interviewed — n 2f~] Black 3 □ Other d. Sex 003) iQMale 2| | Female f. Religion (OOS) 1 LT] Protestant 5 P] None 2 fj] Jewish 8 Q Don't _ i — i -. , know 3 [ | Catholic 4 Q] Other 1r Information obtained in section A Day g. Circle tha highest grade or year completed in school (006) Q Never attended regular school Elementary 12 3 4 5 6 7 8 High school 9 10 I I 12 College 21 22 23 24 25 26+ Which degree(s) did he/she receive? iQ Associate 4 Q Doctorate (M.D. , Ph. D. , LL. B.) ^ Section B - STAF F MEMBE R 2 Q Bachelors 5 Q Other 3 Q Masters 6 Q None Name (Last, tirst. middle) Position 3 □ Other - Specify Year ' Time 1 I a.m, p.m. h. Father's full name (Last, first, middle) i. Mother's full name (Lost, first, middle) (ooi) '" ' O Family member to be notified — 2 r^] No family or next of kin on record ^ (1) Name (Last, first, middle) Relationship Address (Number and street) City State ZIP code (p\Q) 4 CH Interview completed Name (Last, first, middle) Position 5 Q Permission to interview staff member denied 6 \~\ Other - Exp/ain__ Information obtained in section B Month Day Year Time a.m. p.m. Telephone (Area code, number, extension) (2) Name (Last, first, middle) Relationship P Section C - RESIDENT mil) 7 Q Interview completed Address (Number and street) City State ZIP code Telephone (Area code, number, extension) 8 □ Permission to interview resident denied 9 Q Resident under 14 Q Other - Exploin_ Information obtained in section C Day Year Time a.m, p.m. 392 Appendix D 33 L Section A - ADMINISTRATIVE ► i ^ PGM 2 1 have several questions about (Name of resident). Let me assure you that the information you provide is confidential and will not be seen by any other persons. The survey data will be used for statistical summaries and no facility or person will be identifiable. la. b. c. When was . . . admitted to this facility for this stay? Month ] Day © ! ! Year ! 19 Was . . . admitted as a result of court action? @ 1 □ Yes 2Q No 8 Q Don't know Is . . . in custody of the court at this time? ® 1 □ Yes 2.Q No 8 Q Don't know 2. Has . . . previously been a resident at this facility? @ iQYes- On what dates was he/she admitted and discharged? (Include all other stays) © ® © Admitted Discharged Month | Year Month | Year 1 19 !l9 ! 19 1 19 [19 ! 19 [19 [19 (015) 2 □ No 3a. b. c. What was the primary reason for . . .'s admission to this facility? (Mark (X) only one) @ '□ ^edicc 1 — Needed medical or nursing care — Specify diagnosis © ® 2 3D - SKIP to 4a Econo _egal nic — No money or resources to keep the person at home — Person was committed or assigned to this facility - Specify reason © © 1 @ 8 n "amily Other — Unable to care for person eason - Specify r 1 | Don't know Is . . . receiving care or treatment for a physical or mental condition at this facility? © 1 □ Yes 2 □ No - SKIP to 4a What condition is this? © FORM SIP-2 (10.1-75) Page 2 34 4a. Have any arrangements been made for ... s 1 , — ■>. , , — , v „ ,. . , . , „ ,. ' , " j. l -»l- *l * i (024) 1 Yes, within 6 months permanent release or discharge within the next Vl2_y — 12 months? i' 2 | | Yes, within 6-12 months 3D No "I ] > SKIP to So 8 Q Don't know J b. Where will . . live after leaving this facility - '(025) 1 D No arrangements at this time in a private home, another facility or whatr P — v — 2 Q Long-term speciality hospital i 3 Q Nursing home or related facility 4 Q Boarding home providing supervision i of residents 5 Q Private apartment or house 6 Q Foster care home I 7 rj Halfway house or community /group residential setting i 9 Q Other place - Specify i ~1r i 8 Q Don't know 5a. What is the total cost per month to this facility for .. .'s care? I ^ $ 00 i viy b. How much is actually received for . . . s care i each month from all sources, including fees i (027) ^ 00 - SKIP to 5d paid by the family, Medicare, Medicaid, and i so forth? * CD Paid for life care at time of admission to facility c. How much did . . . pay for the life care he I will receive? \(nj^\ $ 00 i vl£5/ d. Does this include any funds for . . .'s personal ' (029) i 1 1 Yes use or pocket money? , v_y — riy .,r> i r ' | 2 □ No - SKIP to bo e. How much per month does • . . receive for his i own use? ' (j£g\ $ 00 Kzzs Notes FORM SIP-2 ( IO-I -7SI 6a. Which of the following sources contribute to this resident s support at this facility? (Ask 6b for each item marked "Yes") (1) Insurance plan or annuity held by resident (2) Private retirement plan from employer and/or union (3) Resident's family (4) Government programs such as (a) Medicaid (Title XIX). . . . (b) Other public assistance payments (c) Medicare (Title XVIII). (d) Supplemental Security Income (e) Social Security benefits. (f) Veterans Administration benefits. (g) Vocational rehabilitation funds. (h) Crippled Children Services. i) Funds from any other government programs - Specify (5) Support from a church or other religious organization (6) Any other source? - Specify-, (Enter total at right) FORM SIP-2 (10-1-75) 00 "oo" 35 6b. How much was received from this source last month? (Oil) 1 □ Yes 2HNO I @S 033) 1 □ Yes 1 2 n no 4 (pis) i r I] Yes 2Q NO \r (036)$ (037) ,□ Yes 2\Z\ No (038)$ @i [H Yes 2[Z\ No 4 (040)$ (JMi)i|Z]Yes 2Q No J ®$ (043) i □ Yes 2 □ No (044) $ @ i □ Yes 2QNo 4 (047) 1 □ Yes 2Q No (049) i[U Yes 2Q No J ©id Yes 2QNO J ©$ (054) 1 □ Yes 2 □ No 4 ©$ (056) $ 00 00 00 00 00 00 00 00 00 00 00 00 ~oo~ (057) i □ Yes 2QN0 1 (058) $ 00 @ 1 □ Yes 2ON0 4 00 Page 4 36 7a. Has anyone been designated as financial administrator (or any funds or income received by this resident? :o60 1 a Yes 2^ No 8 r^j Don't know SKIP to 16 b. Has any official of this facility (institution) been given power-of-attorney over any funds or income received by this resident? 062) ' □ Yes 2 3) No - SKIP to 16 c. What position or title does this person hold at this facility? SKIP to section 8 d. Who is responsible for handling financial matters? (Mark (X) only one) (064) 1 □ Resident 2 3 Spouse 3 Q] Parent 4 Qj Brother or sister 5 r^\ Adult son or daughter 6 Q Other relative 7 Q] Friend 8 Q Guardian 9 Q Social agency 10 Q Other - Specify 88 Q] Don't know Notes FORM SIP-2 (10-1-75) Q Page 5 37 ^ Section B - STAFF MEMBER INTERVIEW INTERVIEWER — This section should be answered by a staff member (aide, nurse, doctor, teacher) who has frequent contact with the designated resident. This survey concerns persons residing in long-term care facilities and schools — the services they receive, the reason for their residence in the facility, and so forth. A sample of residents has been selected in this facility. 1 have several questions about (name of resident) — his/her physical condition, the services he/she is receiving while a patient here, and so forth. Let me assure you that this information is confidential and will not be seen by the resident or any other person at the facility. The data will be used to prepare statistical summaries and no person or facility will be identifiable. 8a. Compared to other persons here does . . . have trouble with — (Ask 8b if "Yes" marked m 8a) (1) His/her vision? i s~^ PGM 3 8b. Does he/she have some difficulty, great difficulty, or is he/she totally unable to (see, hear, speak, walk)? Some difficulty Great difficulty Unable (068) i □ Yes * 2 □ No ► 3 D «□ *□ © i □ Yes * 2 | | No 3 D «□ = □ @ ' □ Yes ► * 2 | | No 3 Q «□ *□ © iDYes. * 2 □ No 3 «□ 5D 9a. Does this person ever need help with personal care such as dressing, eating, bathing, or other daily activities? (072) i □ Yes 2Q No -SKIP to 10 b. How often does . . . need assistance with — (2) Eating? Never Occasional ly Regularly Totally dependent on help © i n 2 3 n «□ © 'D 2 3 D *D (3) Drinking? © '□ 2D 3 D «D (4) Bathing? © »a 2 n 3 «D (5) Dressing? .... © »□ 2 n 3 n *□ © »□ *n 3 n *□ © < □ 2 n 3 n «q c. Does he/she control urination and bowel movements completely? © 1 □ Yes 2 Q No FO RM SIP-2 (1 0-1 -751 38 SHOW FLASHCARD 5 10. For each of the activities listed, please tell me which category best describes this person. a. Sense of direction. I (08l) 1 CZI Can ' eave facility grounds or home without 1 getting lost 2 Q Can go around facility grounds or vicinity of home without getting lost 3 Q Goes around building or home alone i 4 Q Gets lost whenever leaves own room or ward 5 Q Other - Specify b. Handles money '(082) 6 !ZD Residents have no occasion to handle money | — while at faci lity i 7 Q Able to handle money, make proper change at facility or on shopping trips 8 Q Cannot use money or make proper change at facility or on shopping trips 9 Q Other - Specify i ▼ c. Writing i (083) 1 iZH Never has occasion to write while at facility i 2 Q Writes logical letters and notes, corresponds with others i 3 Q Can only print individual words such as name 4 □ Other - Specify r d. Reading i (n^\ 5 Q Books, magazines, etc., are not available i — to residents 6 Q Reads books, magazines, newspapers regularly i 7 Q Reads books, magazines, newspapers occasionally 8 Q Doesn't read but knows how 9 Q] Doesn't know how to read e. Cleans room ' (08?) 1 CZI Residents not expected to clean room/ward 2 Q Cleans room/ward well — able to straighten bed i 3 Q] Attempts to clean room/ward, but not well done 4 Q Does not attempt to clean room/ward f. Personal belongings I (086) 5 CZI Has no personal belongings at facility i 6 Q Always takes care of personal belongings 7 Q Occasionally takes care of personal belongings i 8 Q Does not take care of personal belongings g. Participation in group activities ' (087) 1 CZI No group activities available at facility 2 Q Initiates or leads in group activities i 3 Q Is active participant in group activities 4 Q Will only participate when encouraged 5 | Does not participate in group activities FORM SIP-2 I 10-1-751 Page 7 39 11. Does . . . use any of the following aids regularly? (1) Eye glasses (2) Cane (including tripod-tip) (3) Walker or crutches (4) Wheelchair (5) Leg brace (6) Back brace (7) Artificial limb (8) Hearing Aid (9) Dentures (10) Colostomy equipment (11) Catheter equipment (12) Kidney dialysis machine (13) Any other aids 12a. Does . . . have access to the grounds of the facility? b. Is supervision generally required for . . . when he is on the grounds of the facility? Exclude organized group activities. c. How frequently does . . . use the grounds? 1 □ Yes 2 a No 1 □ Yes 2\—\ No i □ Yes 2 □ No 1 □ Yes 2]—\ No ® 1 QYes 2 □ No 1 □ Yes 2Q No 1 □ Yes 2Q No < OYes 2Q No 096) 1 CZI Yes — ^ re * ne y TU " or partial dentures? 2 □ Full 3 Q] Partial <»□ No '□Yes 2Q No i □ Yes 2Q No 1 □ Yes 2Q No ,!;«,) i □ Yes -Specify 2Q No @ i DYes 2Q No -SK/P to !3o © 'QYes 2Q No (l03) 1 □ At least once a day 2 Q At least once a week 3 Q Less than once a week FORM SIP-2 (10-1-78) Page 8 40 13a. Does . . . stay in bed all or most of the day? i (]qq) i n Yes | V -^ 2 □ No -SKIP to 13d b. Does ... sit in a chair once or twice a day or more? i /Tj7?\ 1 — Yes — SKIP to 1 4a ' 2 □ No c. Does he/she sit up in bed? I /<77\ i i — i Y P c "^ ! W U V SKIP to I4a ! ^DNo J d. Does . . . stay in his/her room or ward all or j (7^\ 1 I — Yes — SKIP to I4a most of the day? i ' — ' 1 2 □ No e. Is he/she permitted to leave the premises of i U08) 1 CH ^ es ~~ Alone? this facility? j * 2QYes 3 □ No 4 □ No SHOW FLASHCARD 3 ! b - How often did he/she ( " ead % A , ,. ■ , ., II- x- •»• ' activity marked in 14a)? 14a. In which ot these recreational or leisure activities i did . . . participate last month? (Mark (X) as many as apply) i c. Did he/she (read activity marked in 14a) on the facility premises? After activities are checked, ask 14b and 14c for each marked activity. ] Daj | At least once a week At least once a month Less than once a month Yes No (1) Go shopping , □ , (k)9) 1 O *□ 3D «□ *□ *□ 2 n 3D *□ = □ e n (3) Go swimming, bowling, dancing I I '(ill) ' Z 2D 3D *n *□ en I V-L/^ (4) Participate in competitive sports Q i(jl2)^ 1 CD 2 D 3 *□ *□ ^n (5) Play cards, bingo, or other games Q [Qn)* 1 Q *□ 3D *□ sn *□ (6) Attend get-togethers, parties, ' qroup conversation I I i(ll4) I I «□ 3D *n = □ en 3 i^- "* (7) Attend plays, movies, concerts !(ll5) 1 I I 2D 3 n or workshops ' — ' ' ^ '* L_ 2D 3D *n *□ "D (1 1) Attend classes, lectures, exhibits, fairs ... . Q 1 U 19) 1 I I 2D 3D *n = □ 6D \\£) Attend meetings or clubs, committees, I and councils □ ] Q20) 1 □ 2D 3D ^n *D en (13) Perform work/service for pay or , . — . as volunteer □ i (l2l) 1 □ 2CH 3D 'D *n en I * (14) Read books, papers, magazines ZZ1 i(l22) 1 ZZ 2 3D 4 D 5 en i — * (15) Watch television □ i@) 1 □ 2ZC 3D *□ »D «□ (16) Write letters or make phone calls (ZZ) i U24) 1 IZZ 2D 3D «. *n en (17) None of these - SKIP to '5 (j2s) o □ None of the above d. Does . . . generally participate in these I / — s , — , Y "^ activities with the other residents in this 1 V]**' ' — ' GS \ SKIP to 16a ward (cottage)? 2 Q No J 41 15. Which of these reasons best describes why . . . does not participate in mo©t recreational or leisure activities? (Mark (X) only one) (l27) ' □ Resident too ill 2 □ Resident not interested 3 Q No one to accompany resident 4 Q Resident can't afford activities 5 Q Lack of transportation 6 □ Other reason - Specify __, 16a. Does . . . regularly need the services provided by a — (Ask 16b for each item marked "Yes" before reading next category in Iba) (1) Physician (2) Dentist (3) Registered nurse (4) LPN or vocational nurse (5) Nurses aide, orderlies (6) Psychologists (7) Psychiatrists (8) Psychiatric aides (9) Interns or medical residents (10) Social workers (11) Occupational therapists (12) Physical therapists (13) Speech therapists or audiologists (14) Recreation therapists (15) Elementary or secondary school teachers. (16) Classroom or teachers aides (17) Other professionals - Specify T FORM SIP-2 (10-1-78) 16b. How often does he/she actually receive th ese services! © 1 □ Yes * 2 □ No © 1 DYes- * 2{Z\ No 130) 1 □ Yes- 2 No © 1 OYes * 2Q No (132) 1 □ Yes * £□ No © 1 □ Yes * 2 I I No © 'DYes * 2\Z\ No © 1 □ Yes 7 2 ONo :i36) 1 * 2 □ Yes- □ No © □ Yes- □ No © 'DYes. * 2 I I No © □ Yes. □ No © iQYes- V2DN0 © * 2 □ Yes □ No 1142) 1 2 □ Yes □ No © 1 QYes □ No * 2 © 1 □ Yes- V2DN0 At least once a week 3D >D 3D 3D 3D 3D 3D 3D 3D 3D 3D 3D 3D 3D 3D »□ »□ At least once a month «□ «D «D • n *n «n *n *n *□ ♦n • n *n «n • n *□ «□ «n Less than once a month »D »D »D sD »D »D 3D = □ 3D 3D 3D 3D 3D *□ 3D 3D 3D Never *□ en en <*□ en en en en en en en en en en en en en Page 10 42 17a. Does . . . ever have any visitors? ©'□ Y « 2 Q No 8 Q Don't know SKIP to 18a b. How frequently does he/she have visitors? (Mark (X) only one) (U6) 1 O Nearly every week 2 Q Monthly 3 Q Several times a year 4 Q Once a year or less 5 rn Other - Specify r 8 Qj Don't know c. Who visits him/her the most frequently? (Mark (X) only one) (T47) 1 □ Relative 2 Q Friend, neighbor, or personal lawyer 3 Q Court appointed guardian 4 Q Minister, priest, rabbi, or other church-associated visitor 5 Q Other - Specify. 8 Q Don't know 18a. In the past 12 months has . . . been on any kind of leave from this facility for overnight or longer, excluding overnight stays in the hospital? 1 □ Yes 2Q No 8 Q] Don't knov SKIP to Check Item A b. About how often does he/she go on leave? (Mark (X) only one) (]#)) 1 fj Nearly every week 2 Q Monthly 3 Q Several times a year 4 Q Once a year or less 5 Q] Other - Specify 8 Q Don't know c. Where does he/she usually go when on leave? (Mark (X) only one) (Y50) 1 n Own home or apartment 2 Q Home of family or relatives 3 Q Home of unrelated friends 4 Q Home of staff member 5 Q Foster home 6 Q Boarding house or room 7 Q Other - Specify 8 Q Don't know CHECK ITEM A Resident's ward is located — (]$]) ' fj In separate cottage 2 Q On floor of building 3 Q In wing of building FORM SIP. 2 (10-1 -70) Page I I 43 19a. Is there a separate dining area in this '(152) 1 \~\ Yes ward (cottage)? | v ^-> / | 2 □ No b. Does this ward (cottage) have its own | (153) 1 |~| Yes lounge or indoor recreational area? i — 2Q No c. How many bathrooms does this ward I (cottage) have? [ (T54) Number d. How many of these bathrooms have equipment i for wheelchair patients? j U55) Number e. How many beds does this ward (cottage) have? Include all beds maintained for regular use by i residents; exclude beds used for emergencies, solely day care or night care, as well as beds i used by staff members. ] (l56) Number f. How many separate sleeping areas does this ward (cottage) have? i U57) Number 20a. How many staff members work exclusively in this ward (cottage) during the day? i (]$%\ Number b. Are separate sleeping quarters for the i (77n\ 1 I I Yes staff located in this ward (cottage)? ! ^ — ' 2 □ No 21a. How many residents are currently living in this ward (cottage)? 1 (^0) Number b. How many beds are in the room where ... j (77^\ 1 I I | sleeps in this facility? I > — ' zQ2 3 □ 3 or 4 4 □ 5 to 9 l 5 Q I or more c. How many other persons use the same bathroom '(^62^ 1 I I ' facilities as . . .? > — ' 2Q2 3 □ 3 or 4 4 □ 5 to 9 5 Q 10 or more 1 6 Q] None 22. How long have you known or worked with . . .? ! (^63) 1 □ Less than I month 2 □ I -3 months 3 Q 4-6 months J 4 □ 7-I I months 5 □ I2-I7 months 6 Q 1 8 months or more THANK RESPONDENT FOR HIS COOPERATION Notes FORM SIP-2 (10-1-78) Page 12 44 Section C - RESIDENT INTERVIEW The Bureau of the Census is conducting a survey on long-term care facilities and schools for the U.S. Department of Health, Education, and Welfare. The purpose of the survey is to obtain information on the characteristics of persons staying at residential care facilities and schools and the types of services they are receiving. A random sample of the residents at this facility has been chosen and your name was selected. I would like to ask you a rew questions at this time and your cooperation will be greatly appreciated. This is a voluntary survey and there are no penalties for refusing to answer any questions. The information you provide will be held in strict confidence; no one will see your answers except employees of the Bureau of the Census who are working on the survey. The data obtained from this survey will be used only for statistical summaries on which no facility or person will be identifiable. HAND S/P-2-LI TO RESPONDENT SCREEN I First 23a. What is your full name? b. What is your date of birth? c. How old were you on your last birthday? d. What is your father's full name? e. What is your mother s full name? f. What is the highest grade or year of school you completed? I Middle Day Year Age Last I First rMiddle Last I First I Maiden I Middle Grade Or year PGM 4 CHECK ITEM B On the basis of the responses to questions 23d— f, do you think the sample person can continue the interview (l64) 1 □ Respondent able to answer three or more questions correctly - Continue with question 24 2 Q Respondent not able to answer, end the interview and enter the reason for termination of the interview in the notes space below. Notes FORM BIP-2 ItO-l .731 Page 13 45 Now, I would like to ask you some questions concerning your previous and present employment. 24. Have you EVER worked for someone else for pay, been employed in your own business, or worked in a family business or farm? © < □ Yes 2 □ No (g) 1 □ Employed 2 [H On official sick leave 3 □ Retired 4Q Laid-off 5 Q Unable to work due to disability 6 Q Looking for work 7 □ Student 8 Q Keeping house 9 □ Other - Specify r 25a. What was your work status just before you came to live in this facility? > SKIP to 26a b.Was that full-time or part-time employment? (urf\ 1 □ Full time - SKIP to 26a 2 Q Part time c. Why did you work Dart time? (](&) 1 Q Disability or impairment 2 Q Other - Specify "* 26a. What is the name of the employer for whom you worked the longest? Refers only to job held prior to institutionalization. Employer | | Never worked - SKIP to 27a b. What kind of business or industry was that? Ask if unclear c. Were you — (]jq) 1 QH An employee or a private company or individual? 2 Q Federal Government employee? 3 |~] State or local government employee? 4 Q Self employed? 5 Q Working without pay in a family business or farm? d. How long did you work at that job or business? (u\) 1 fj One year or less 2 Q] More than one year but less than five years 3 fj Five years or more e. In what year did you last work at your usual occupation? © 19. f. What was your usual occupation? © g. How much did you usually earn a year at this occupation? (ua) $. 8 P] Don't know 00 FORM SIP-2 (10-1-75) Page 14 46 27a Do you now have a job at this facility or at some © other place? 1 □ Yes b. 2Q No -SKIP to 28a What kind of work do you do? '© c. Do you work for pay or without pay? © 1 □ With pay d. 2 Q Without pay How many hours per week do you usually work at this job? © 5 Q Less than 35 hours e. 6 Q 35 hours or more Do you work on the grounds of this facility © or somewhere else? 7 | | haci lity f. a Q Somewhere else Is the place where you work a sheltered workshop, (iio) that is, a place which employs mostly persons with 1 □ Yes -SKIP to 28a disabilities or other special problems? 9- 2 □ No Are you participating in a work rehabilitation ® program? 3 □ Yes 4 □ No 28a. Are you presently attending school? © sQ Yes b. 6 □ No -SKIP to 29a Do you attend classes at the facility or somewhere else? ® 1 □ At the facility 2 Q Somewhere else c. 3 □ Both What year of school are you attending? © o Q Nonacademic classes © Elementary I 2 3 4 5 High school 9 10 II 12 College 21 22 23 24 6 7 8 25 26+ 29a. Are you now married, widowed, divorced or © separated, or have you never been married? 1 Q Married 2 Q] Widowed -n 3 | | Divorced 4 ' ] Separated ► SKIP to 30a b. 5 H~] Never married Does your husband/wife live here also? © 6 n Yes 7 No FO RM SI P-2 ( 10- I - 7' 47 30a. Where did you live before coming here? (Read list and mark (X) one) U88) 1 Q Boarding home 2 r~] Private apartment or house 3 Q~J Foster care home 4 rj~ J Other private or public resi( Specify-, ence 5 [~ ~J General or short-stay hospital 6 Q Nursing home or related facility 7 rjH Long term specialty hospital 8 Q Don't know J ► SKIP to 31a b. How were you related to the persons with whom you lived? (Mark (X) all that apply) (J89) 1 1 □ Spouse * 12 O Children 13 Q] Parents 14 | Brothers/sisters 1 5 r~2 Other relatives 16 [~J Foster fami ly 17 [~J Unrelated persons 18 QJ Lived alone 88 Q Don't know 31a. Who are the people you have kept in touch with by telephone, mail, or visits since you've been living here? (Read list and mark (X) all that apply) Ask 31b and c for each marked category before continuing. b. How do you contact your . . . (read items marked in 31a) - by telephone, mail, or personal visit? (Mark (X) all that apply) Ask for each item "personal visit" c. How often does y visit you persona marked in 31b our . . . Ily? Telephone Mail Personal vi sit Weekly Monthly Occasional ly (less than monthly) Parents □ □ □ □ □ □ □ □ □ □ □ a □ ®, '□ 2 Q *□ *□ 5Q *□ ©* ' a 2 H 3[H *□ «□ * □ Spouse ®* 'D 2 n 3D *□ «D en Children ®* 'D 2 3D «□ sp en Aunts/uncles ®* 1 □ *n *n *D *D en ®* in 2 3D «D *D «□ ®* 'D 2 3D • a 5 D en Cousins ®* 'D *□ 3D «□ 5D en Neighbors ®, '□ 2D 3D ♦ a »□ en Friends from work Friends from church Other friends Other - Specify ©* 'D 2d 3D *n sin en ®, '□ *D 3D *n 5D en ©* '□ 2D 3D *n »n en ®* 1 □ 2D 3D «n *n en ~r No one (203) □ No one FORM SIP. 2 (10-1.76) Page 16 43 32a. Since you have been living here, have you been i on leave from this facility overnight to visit J (204) 1 C j ^ es friends, relatives, or someone else? 1 2 □ No -SKIP to 33 b. How often do you go on leave? '(205) 3 CU Nearly every week i 4 r~J Monthly i 5 [~J Several times yearly i 6 [~ /] Once a year or less frequently i 7 [~J Other - Specify i r 8 Q Don't know c. Where do you usually go when you are j on leave from this facility? i (206) 1 □ To own home or apartment (spouse or parents) (Mark (X) one box) 2 □ To home of other family member or relatives 3 f - _~j To home of unrelated friends 4 [~ _ ~ J To foster home 5 [~J To boarding house or room 6 r~J Other place — Specify 33. How often do you leave here to visit your family I /~7^\ — i yy ee Li v or friends for a weekend, holiday, or to go on KzlJ — ' shopping trips or outings? Do not include an 1 " 3 times a month overnight visits. i 3 [~J Less than once a month 4 r~J Not at all 34. How many times during the last week did you ' s — \ , — , n^ i • i. . ■ . ... i ( ?rm i i r Uaily visit, socialize, or participate in activities I VJ_V — with other residents of this facility? 2 □ 2-6 times (a few) 3 [~J Once 4 r~J Not at all 35. Do you have enough to do here to keep ! , — N you busy? ! (209) 1 □ Yes * 2 [~ ~J No — Are you often bored? 3 □ Yes 4 [~] No Notes FORM SIP-2 I I 0- I -781 Page 17 49 36. How do you feel about each of the following " facility characteristics? Do you like or dislike the - 1 Llke Dislike Don't know *D 3D b. Lodging, accomodations? I (tTT) 1 CD *D 3D 2D 3D d. Treatment services such as medical, nursing, i 2D 3D e. Members of the staff, excluding the treatment i program itself? ] (2T4) 1 Q] 2D 3D f. Social activities or things available for you i to d <> ? ! @ 1 □ 2CD 3D g. Relationships you have with other residents i 20 3D h. Relationships with your family and friends 2D 3D 1. How many other persons were in (2I8) ° CD None the respondent's room during 1 this interview' | ^ Other residents i(220) Staff members CHECK ! [TEMC j® Other persons 2. Did they help respond? 1(222) 1 CD Yes 2 CD No 1 3 CD Interpreted questions only We would like to talk to a member of your family. 1 have a statement of authorization which 1 will read to you and would like you to sign. Remember that the information provided by you will not be seen by anyone; including staff members here or persons in your family. Read statement of authorization on page 20 and ask resident to sign. FORM SIP-2 (10.1.75) Page 18 50 NOTES © ® FORM SIP-2 110-1-70) Page 19 51 Authority is hereby given to the Bureau of the Census to contact my family for the purposes of the Survey of Institutionalized Persons. I have been informed that this is a voluntary survey and there are no penalties for refusing to partici- pate. I understand that all information which would permit my identification will be held in strict confidence and that the data will be used only for statistical summaries. Signature of resident Date FORM SIP-2 UO. 1-751 Page 20 *U.S GOVERNMENT PRINTING OFFICE 1975-659-979 ~PGM 5 I 0.1* .B. No. 4I-S75070; Approval Expires December 31. 1976 NOTICE — Your report will be held in strict confidence and will be seen only by sworn Census employees and may be used only for statistical purposes. FORM SIP-3 (10-1-78) U.S. DEPARTMENT OF COMMERCE BUREAU OF THE CENSUS ACTING AS COLLECTING AGENT FOR THE U.S. DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE FAMILY QUESTIONNAIRE SURVEY OF INSTITUTIONALIZED PERSONS Interviewer name i Code i i a. Family member name i Relationship © OFFICE USE ONLY (002) ASK ITEMS e AND t AFTER INTERVIEW e. Respondent age How old were you on your last birthday? Age Address (Number, street, apartment) City [State J ZIP code © f. Complete by observation or ask — What type of home do you live in? 1 [~ J Trailer 2 [~ J Single family house 3 [~ J Duplex/2-family unit 4 [~J Row house (3 or more units in attached row) 5 [~ J 3 or 4 family unit 6 [~J Apartment house (5+) 7 f - J Unit in hotel/motel 9 □ Other Telephone No. (Including area code) b. If reference to other family member Name i Relationship Address (Number, street, apartment) City [State J Telephone number i (Including area code) c. RECORD OF CALLS d. RECORD OF INTERVIEW g. DESCRIPTION OF CONTACT Date Time Began a.m. p.m. (004) 1 (~ J] Interview completed by personal visit 2 Q Interview completed by telephone 3 □ Refusal, Explain l a.m. p.m. 1 a.m. p.m. 4 [~J Temporarily absent :, Date of return a.m. t p.m. Ended a.m. p.m. 1 a.m. p.m. 5 j - J] Deceased 6 [~ J Unable to contact Explain a.m. p.m. Date 7 □ Other ¥■ a.m. 1 p.m. INTRODUCTION The Bureau of the Census is conducting a survey for the Department of Health, in institutions and schools providing long-term care. As part of this study, we this type of facility. 1 would like to ask you a few questions about — during his/her stay at (Name of resident) Education, and Welfare on persons residing are interviewing the families of persons in (Name of facility) la. Does . . . still reside in this facility? i ~ PGM 6 @ i □ Yes -SKIP to la 2Q No 53 b. Was he discharged or has he been transferred to another facility? 3 [~ J Discharged 4 [~ J Transferred 5 □ Died 6 □ Other - Specify . c. When did this happen? (008) 19 Month Year 2a. What is the highest grade or year of regular school . . . ever completed? (Circle highest grade/year completed) 009) ° CH Never attended regular school Elem I 2 3 4 5 6 7 High 9 10 II 12 College 21 22 23 24 25 26+ SKIP to 3a b. Did . . . receive a college degree? II )) 1 □ Yes 2|7J No -SKIP to 3a c. What degree(s) did he receive? (Mark (X) all that apply) 3 [~J Associate 4 [~J Bachelor's 5 | | Master's or Professional (M.D., LL.B., etc.) 6 □ Doctorate (PH. D.) 3a. Immediately prior to his (most recent) admission to (name of facility) what was . . . doing — working, going to school, or something else? If ill probe for major activity before illness. ® 1 [~J Working 2 [~J Looking for work 3 □ Retired 4 [~ J Going to school 5 (7J ] Keeping house 6 [7J Unable to work 7 [~J Other - Specify _ b. When did . . . last work at a full-time job lasting 2 consecutive weeks or more? 1 97 Year (qu) 1 □ Before 1970 2 [~ J Never worked at full-time job for 2+ weeks 3 [~ J Never worked SKIP to 5o 4a. For whom did . . . work? Employer b. What kind of business or industry is this? c. What kind of work was . . . doing? © d. What were his most important activities or duties? Most important duties FORM SIP-3 (10-1-75) Page 2 54 4e. Was he - © 1 □ An employee of a PRIVATE company, business or individual for wages, salary or commission? 2D A FEDERAL government employee? 3D A STATE government employee? *□ A LOCAL government employee? sn Self employed in OWN business, professional practice or farm? If not a farm, ASK - Is the business incorporated? ® 6 □ Yes 7 □ No f. 'D Working WITHOUT PAY in family business or farm? How much did . . . usually earn at this 00 job before deductions? (019) $ per © 1 □ Week 2 Q Month 3 □ Year 5a. Did . . . reside with you prior to his (most Yes b. recent) admission to (name of facility)? No -SKIP to Sd Has . . ,'s condition EVER caused any strain on this family's relationships, such @ 1 □ Yes c. as conflicts between family members? 2D No -SKIP to 5e Was this before or after . . . entered @3D Before (name of facility)? After V SKIP to 5e d. s'D Both before and after J Where did he live just before his admission? ® 1 □ In other health care facility - Probe for (Read) ► residence prior to that stay and mark appropriate category below: © 2[] In a private home or apartment 3D ♦ □ In a halfway house or community/group .SKIP to 6 residential setting «n Other place - Specify e bD How was . . . related to the persons with whom he lived? (Mark (X) all that apply) (026) 1 □ Spouse * 2[] Parents 3Q Children *D Brothers/sisters sD Other relatives f. en Friends Altogether, how many persons lived in this q household at the time he entered the facility? © Number of persons How many persons are now living in thi s household? @) Number of persons FORM SIP-3 ( 10-1 -75) Page 3 55 6. Sometimes the availability of certain services in the community would enable a person to continue living in his residence rather than being institu- tionalized. Which of the following services, if any, would have enabled . . to continue living where he was? (Read) ► (029) 1 [3D Food delivery service, such as Meals-On-Wheels 2 Q Housekeeping/shopping errands 3 \^\ Home health assistance, such as nursing or physical therapy 4 \^} Day care assistance 5 Q Transportation 6 Q Any other services 7 Q None Now I have some questions about (name of facility) and the care . . . has received there. (Refer to question la — if "No" read: Even though he is no longer a resident at this facility, we would like to obtain some information about this stay.) What was the primary reason for . . .'s admission to this facility? (030) 1 Q Medical - needed medical or nursing care - What was the specific medical condition?— -, 2 Q Economic — no money or resources to care for person at home 3 Q Legal — person was committed or assigned to faci lity 4 Q Family - unable to care for person 5 Q Other - Specify a Q Don't know la. Were you involved in the decision as to whether or not . . . should be institutionalized? ® 1 □ Yes 2Q No b. Did . . . admit himself to this facility? 3 □ Resident admitted self - SKIP to 9a 4 Q Admitted by parent or spouse 5 Q Admitted by other relative, friend or guardian 6 Q Admitted by public authority (e.g. Welfare) 7 Q] Committed by court order 9 □ Other - Specify c. What is the legal status of . . .? (Read)- (034) 1 rj Under parental or spouse's control 2 rj Under guardianship of the state or the institution 3 rj Under guardianship of other person outside the institution 4 Q] Under custody by court order but competent 5 Q Declared incompetent by court 6 Q Legally competent 7 □ Other - Specify Notes FORM SIP-3 (10-1-75) Page 4 56 9 . At the time admission to an institution was ® 1 n Yes being considered for . . ., were any oth er care arrangements or facilities also investigated? 2U No show flashcard(T) © 'D Location — near home of resident b. Which of these reasons explain why this particular institution was chosen? (Mark (X) all that apply) j * 2D 3D an 9D °n Location — near home of relative Level and type of treatment provided Able to get care without charge or at reduced cost Only place providing required treatment or care Assigned by the court Admitted by staff or personal physician Recommended by family, friends, or a former patient Recommended by doctor, agency, or court Other - Specify If more than one reason marked in 9b, ASK 9c; Reason otherwise SKIP to 9d c. d. What is the most important reason? I®) H. How did you and . . . find out about this facility? (Mark (X) only one) ® 1 □ Self 2 | | Physician or psychiatrist 3 □ Hospital *D Media (T.V., radio, newspaper, etc.) *□ Welfare agency or association for the handicapped *n School, professional counselor, or minister ?□ Court or judge 'D Other - Specify 10a. Were there any eligibility or admission © in Yes — What were they? b. for . . . to be admitted to this facility? © 2 3 No When application was being made for this person to enter this facility, was there a need for help i® 3D Yes c from someone who knows how to make such applications? *n No -SKIP to 1 la What kind of help was required? Kind !® 11a Has . . . been a resident or patient in 1® in Yes any other long-stay or group-care facili or had any other stays at this facility? ty 2D No \SKIP b en Don't know J ^ 13a In how many different facilities has . . c resided? Include (name of facility). 1(044) Numher What is the total length of time that . . has spent in long-term institutions or facilities? !© Years on Less than one year FORM SIP-3 I 10- I -7BI Page 5 57 12a. What is the name of the first (second, etc.) facility at which . . . was a resident or patient? Second Third (048) b. What kind of facility is this? 049) Month c. When was he admitted for this stay? (050) Month 19 Year 19 ® Month Year 19 d. When was he discharged? (Re-ask I2a-d) ® Year 19 (053) Month Year 19 054) Month Year 19 13a. What forms of discharge are available to . . .? (Mark (X) all that apply) 1 Q Permanent 2 Q Temporary — with specific time limit 3 Q Conditional 4 Q] Other - Specify b. Who can initiate a petition for discharge for him? (Mark (X) all that apply) (056) 1 Q Spouse 2 Q The resident himself 3 Q The person responsible for admission 4 Q Parent or guardian 5 Q Superintendent or faci lity administrator 6 □ Other - Specify c. Who has the authority to make the final decision on permanent discharge of this resident? (Mark (X) all that apply) (057) 1 □ The court * 2 Q The facility administrator, superintendent 3 Q Other person such as a family member 4 Q Other authority outside the facility 5 Q The resident himself 14a. Do you expect ... to be discharged or released from this facility? 1 QYes 2\Z\ No 8 Q Don't know } SKIP to /5a b. When? (059) 1 Q Within 6 months 2Q6 months to I year 3 Q I year or more "^ 4 Q Never \ 8 Q] Don't know J SKIP to 15a c. Where would . . . live after discharge? (Read) (060) 1 (ZH ' n a private apartment or house 2 Q In a foster care home 3 [~] In a halfway house or community group residential setting 4 Q In a boarding home 5 Q In a nursing home or related facility 6 Q In a long-term specialty hospital 7 Q] No arrangements at this time 9 □ Other place - Specify 8 Q Don't know SKIP to /5a FORM SIP-3 (10-1-75) Page 6 58 14d. Who would . . . live with? ® '□ Alone (Mark (X) all that apply) * 2 n Spouse 3D Chi Idren *n Parents *□ Brothers/sisters en Other relatives ?□ Foster fami ly *□ Unrelated persons bD Don't know 15a. Does the facility conduct a periodic ® '□ Yes b. review of . . .'s suitability for continued residence? 2D en \ SKIP to 16a Don't know J Are you given official notification © in Yes -SKIP to ISd c. d. of the review by the institution? 2D No Is anyone outside the institution notified? (064) 3D Yes - Who? No Are you allowed to participate ® eD Yes in the review? en No en Don't know 16a. When was the last time you talked (066) 'D Within the past month with a responsible person at (name of facility) about . . .? ^n 3D Within the past 6 months Within the past year *n More than a year ago ""S en Only at time of admission > SKIP to 17a b. en Not at all J Who was this? ® in Administrator 2Q Physician 3 Nurse *D Teacher en Other - Specify 17a. How often do you (or your spouse) visit . . .? (068) 'D At least once a week 2 At least once a month 3D At least once every 6 months *n At least once a year en Less than once a year b en Not at all How often does . . . have a visit ® '□ At least once a week from another family member or close friends? *n 3D At least once a month At least once every 6 months 4; At least once a year en Less than once a year en Not at all «n Don't know 18. How far is (name of facility) ® from here? Miles on Less than one mi le FORM SIP-3 110-1 -751 Page 7 59 SHOW FLASHCARD (7) 19a. 1 would like to show you a list of services that a faci Please glance over this list. Which of these services do you think . . . needs? ity might provi □ ■ □ □ • □ □ • □ • □ a ■ □ ■ a ■ □ ■ □ ■ □ ■ □ ■ □ □ □ de. b. Does he/she receive (read categories marked in 19a) regularly, occasionally, or never? Regularly Occasional ly Never © iD 2D 3D ® 1 □ 2D 3D Private duty or special nursing Psychiatric services © in 2D 3D © '□ 2D 3D © 1 □ 2D 3D Special education Counseling by psychologist, social © '□ 2D 3D © Section II ADMISSIONS AND DISCHARGES IN 1975 INTERVIEWER — Ask the following questions of a person who is familiar with the records at this institution. 1. How many persons were admitted to this institution from January 1, 1975 to December 31, 1975? Admii 2. How many persons were discharged from this institution during 1975, excluding those who died? Discharges 3. How many persons died while residents of this institution during 1975? a. How many of these deaths occurred within this institution?. b. How many occurred in an acute or short-stay hospital? .... c. How many occurred while the patient was at home on leave? Death: When all deaths are accounted for - SKIP to section V 64 Section 111^ ESTIMATED NUMBER OF RESIDENTS ESTIMATED NUMBER "^^ SW i TE Section IV^ SAMPLING INSTRUCTIONS Section V \ OBTAINING AN ACCURATE COUNT OF RESIDENTS / ASOF LAST NIGHT m INTERVIEWER - READ, "The following questions pertain to your residents AS OF LAST NIGHT. For this survey we want to know about residents who are assigned to long-term care units, that is, units where the usual stay is thirty days or more. 1 ' Count 1. How many persons were on the register of this institution last night? 2. Of the persons included in the Count you just gave me — Males , Females Under 1 8 years ^ INTERVIEWER - If necessary revise the entries in items 2a— e to r correspond with FINAL COUNT. 3. Does this number INCLUDE all persons - YES NO NA n n □ b. Who are temporarily absent from their units, for example, on leave, or any other reason; but for whom a bed is being held? .... □ □ □ c. Who are absent from their units on a more permanent basis, for example, assigned to another institution for special treatment or care, and for whom a bed is being held? □ □ □ d. Who are staying here and will be assigned to a long-term care n n □ m INTERVIEWER • Review entries in 3a-d. INSTRUCTIONS . | f a , , Y ES or NA. SKIP to 4. • For each NO entry, say: "You told me that the Count of residents does not include persons who . . . (read situation). About how many of these types of persons were under the care of this institution last night?" Enter the number on the line provided. FORM SIP-5 110-2-75) Page 2 S ec t i Z5 65 OBTAINING AN ACCURATE COUNT OF RESIDENTS AS OF LAST NIGHT - Continued 4. Did you INCLUDE in your Count any persons - a. Who are not assigned to long-term care units, for example, out-patients or temporary nursing care residents? b. Who are assigned to half-way houses or other units which are not under the direct charge of this institution? c. Who are absent from the institution and for whom a bed is NOT being held? YES □ . □ . □. NO □ □ a NA □ □ a INTERVIEWER • Review entries in items 4a-c. INSTRUCTIONS If all NO or NA, SKIP to Interviewer Check Item. • For each YES entry say: "You toid me that the number of persons assigned to long-term care units includes persons who . . . (read situation). How many of these types of persons were included in the Count?" Enter the number on the line provided. STEPS FOR CORRECTING THE COUNT - Notes A. Transcribe Count from Section V, item I © B. Add the entries from the "NO" boxes in items 3a through d, and enter that sum . INTERVIEWER CHECK ITEM C. ADD ©to® and enter sum D. Add the entries from the "YES" boxes in items 4a through c, and enter that sum . . © © E. SUBTRACT (d) from (c) and enter the result FINAL COUNT FORM SIP-5 (10-2-75) Page 3 66 S ec t i o n Vl^ INTERVIEWER INSTRUCTIONS • 1. Compare the ESTIMATED NUMBER (section III) with the Final Count (section V, Check Item), Determine whether the difference between the estimated number and the Final Count must be reconciled as directed in your manual and illustrated below. Estimated Number 1 20 — Final Count 100 ^ ^20) njt In this case the difference must be reconciled. When reconciling the differences, probe as follows: "The Final Count we arrived at is (entry in section V, Check Item). However, in 1973 this institution reported that it had (entry in section III) residents in long-term care units. Can you think of any reason for the difference?" Enter the reason for the difference in section I, item 3. • 2. Obtain a usable list of residents from the respondent. For example, you might say: "Now I need to select a sample of persons assigned to long-term care units. I need a list, roster, file or other record of these persons, but it must contain the identification numbers or names of the (read the Final Count) persons who were included in the Final Count we just discussed." • 3. When you obtain a list, ask enough questions to establish whether it contains all the persons included in the Final Count. For example — a. ASK: "Does this list include all residents of . . . (read institution name from section I)?" b. Review the entries in section V, item 3. For each situation with a NO answer, ASK: "Does this list include any persons who . . . (read the situation from section V)?" If any eligible persons are missing from the list, obtain a supplemental list of these persons. c. Review the entries in section V, item 4. For each situation with a YES answer, ASK: "Does this list include any person who . . . (read the situation from section V)?" If there are persons on the list who should not be, ask the respondent to identify these persons and follow the instructions in your manual. 4. When you have a usable list, select the sample of residents. Use the sampling instructions shown in section IV of this form. • 5. After selecting the sample, verify it using the following formula — Final Count* - SW TE + I = Number of Sample Cases Final Count plus any unidentified ineligibles on the sampling materials. EXAMPLE - The Final Count is 50 and there are no unidentified ineligibles. The START WITH (SW) is 7 and the TAKE EVERY (TE) is 10. After sampling you have 5 sample cases. You would verify this as follows — 50-7 ,\ /43 -|o— +i Hto- Aj + I Drop the ^remainder/ 4 + 1=5 FORM SIP-5 (10-2-75) Page 4 5 Section VI > INTERVIEWER INSTRUCTIONS - Continued 67 • 6. Use this space for sample verification calculations: • 7. If you select more than 24 sample cases, subsample using the Subsampling Table below unless instructed otherwise in cover item 3. SUBSAMPLING TABLE Total sample cases (a) Start with 1 Take every (b) (c) 1 - 24 Take all sample cases 25 - 49 1 2 50 - 74 2 3 75 - 99 3 4 100+ Call supervisor i • 8. After verifying the sample and doing any necessary subsampling, transcribe the name and institution location for each sample person to section VII. INTERVIEWER | □ This institution was subsampled. „. ! TEM Jm □ This institution was NOT subsampled. FORM SIP-5 (10-2-75) Page 5 68 Section V 1 1^> SAMPLE PERSON LIST 01 Name 13 Name Bed, ward, or other location Bed, ward, or other location 02 Name 14 Name Bed, ward, or other location Bed, ward, or other location 03 Name lb Name Bed, ward, or other location Bed, ward, or other location 04 Name 16 Name Bed, ward, or other location Bed, ward, or other location 05 Name 17 Name Bed, ward, or other location Bed, ward, or other location 06 Name 18 Name Bed, ward, or other location Bed, ward, or other location 07 Name 19 Name Bed, ward, or other location Bed, ward, or other location 08 Name 20 Name Bed, ward, or other location Bed, ward, or other location 09 Name 21 Name Bed, ward, or other location Bed, ward, or other location 10 Name 22 Name Bed, ward, or other location Bed, ward, or other location 11 Name 23 Name Bed, ward, or other location Bed, ward, or other location 12 Name 24 Name Bed, ward, or other location Bed, ward, or other location FORM SI P-6 i 10-2-78) Page 6 69 Section Vll^ SAMPLE PERSON LIST - Continued 25 Name 37 Name Bed, ward, or other location Bed, ward, or other location 26 Name 38 Name Bed, ward, or other location Bed, ward, or other location 27 Name 39 Name Bed, ward, or other location Bed, ward, or other location 28 Name 40 Name Bed, ward, or other location Bed, ward, or other location 29 Name 41 Name Bed, ward, or other location Bed, ward, or other location 30 Name 42 Name Bed, ward, or other location Bed, ward, or other location 31 Name 43 Name Bed, ward, or other location Bed, ward, or other location 32 Name 44 Name Bed, ward, or other location Bed, ward, or other location 33 Name 45 Name Bed, ward, or other location Bed, ward, or other location 34 Name 46 Name Bed, ward, or other location Bed, ward, or other location 35 Name 47 Name Bed, ward, or other location Bed, ward, or other location 36 Name 48 Name Bed, ward, or other location Bed, ward, or other location FORM SIP-5 (10-2-75) Page 7 FORM SIP-5 ( 10-2-7 5) Page 8 71 U.S. DEPARTMENT OF COMMERCE BUREAU OF THE CENSUS SURVEY OF INSTITUTIONALIZED PERSONS FLASHCARD BOOKLET FORM SIP-4 72 FLASHCAR D© 1. Nursing home (including extended care facilities and skilled nursing homes) 2. ECF unit of a hospital 3. Nursing care unit for retirement center 4. Convalescent or rest home 5. Home for aged 6. Sheltered or custodial care home 7. Orphanage or home for dependent children 8. Home for unwed mothers RESIDENT FACILITY OR SCHOOL FOR THE - 9. Blind 10. Deaf 11. Emotionally disturbed 12. Mentally retarded 13. Other neurologically handicapped persons 14. Physically handicapped RESIDENT TREATMENT CENTER FOR - 15. Alcoholics 16. Drug abusers 17. Other facility 73 FLASHCARD (7) Geographic location Level and type of treatment provided ~J Care without charge or at reduced cost Only facility providing required care treatment Assigned by court Church or religious affiliation of facility Recommended by physician Recommended by family or friends Recommended by welfare, family services, or other public agency Other 74 LASHCARD (7) 1. Go shopping 2. Go to a beauty or barber shop 3. Go swimming, bowling, dancing 4. Participate in competitive sports 5. Plays cards, bingo, or other games 6. Attend get-togethers, parties, group conversation 7. Attend plays, movies, concerts 8. Attend religious services or church related activities 9. Attend sporting events 10. Attend arts and crafts classes or workshops 11. Attend classes, lectures, exhibits, fairs 12. Attend meetings of clubs, committees, and councils 13. Perform work/service for pay or as a volunteer 14. Read books, papers, magazines 15. Watch television 16. Write letters or make phone calls 17. None of these 75 FLASHCAR D© Meals (at least one n\eal daily) Nursing care, health referral services Physical or occupational therapy Recreational activities (use of grounds) Transportation and/or escort services Homemaker or chore services Visiting or telephone check services Elementary or secondary education program Special education program Professional counseling Other 76 FLASHCAR D© A- SENSE OF DIRECTION 1. Can leave facility grounds or home without getting lost 2. Can go around facility grounds or vicinity of home without getting lost 3. Goes around building or home alone 4. Gets lost whenever leaves own room or ward 5. Other ^ B -HANDLES MONEY 6. Residents have no occasion to handle money while at facility 7. Able to handle money, make proper change at facility or on shopping trips 8. Cannot use money or make proper change at facility or on shopping trips 9. Other ^ C -WRITING 1. Never has occasion to write while at facility 2. Writes logical letters and notes, corresponds with others 3. Can only print individual words such as name 4. Other ^ D - READING 5. Books, magazines, etc. not available to resident 6. Reads books, magazines, newspapers regularly 7. Reads books, magazines, newspapers occasionally 8. Doesn't read but knows how 9. Doesn't know how to read ^ E - CLEANS ROOM 1. Residents not expected to clean room/ward 2. Cleans room/ward well; able to straighten bed 3. Attempts to clean room/ward; but not well done 4. Does not attempt to clean room/ward ^F - PERSONAL BELONGINGS 5. Has no personal belongings at facility 6. Always takes care of personal belongings 7. Occasionally takes care of personal belongings 8. Does not take care of personal belongings ^G - PARTICIPATION IN GROUP ACTIVITIES 1. No group activities available at facility 2. Initiates or leads in group activities 3. Is active participant in group activities 4. Will only participate when encouraged 5. Does not participate in group activities 77 FLASHCARD (S) Location — Near home of resident Location - Near home of relative Level and type of treatment provided Able to get care without charge or at reduced cost Only place providing required treatment or care Assigned by the court Admitted by staff or personal physician Recommended by family, friends, or a former patient Recommended by doctor, agency, or court Other 78 FLASHCAR D0 Physician services General nursing services Private duty or special nursing Psychiatric services Elementary or secondary education Special education Counseling by psychologist, social worker, or mental health worker Physical therapy Occupational therapy, job placement Speech and hearing therapy Recreational therapy or supportive activities program Other professional services Transportation Drugs/medication Special medical supplies or equipment — such as wheelchairs Special diet Other 79 FLASHCAR 0© Under $1,000 $ 1,000- 1,999 2,000 - 2,999 3,000- 3,999 4,000 - 4,999 5,000- 5,999 6,000- 7,499 7,500- 9,999 10,000- 11,999 12,000- 14,999 15,000 - 19,999 20,000 - 24,999 25,000 - 49,999 50,000 and over 8 80 Appendix B Definitions of Survey Terms Administrator. Head or director (operational management) of the institution. Bed. A bed regularly maintained and serviced by facility staff members for residents or patients, excluding beds used by staff members or for emergency purposes only. Campus (facility). The contiguous buildings and grounds of the institution used in any part of the usual operation. Condition. Physical or mental ailment. Date of Admission. Date the resident or patient was last admitted or formally entered on the institution register. Discharge. To remove a resident from the facility register and no longer maintain a bed for his/her use or return. Family member (next of kin). Person related by blood, marriage, or adoption, (for children, a foster parent if there is no other relative). Full-time employment. 35 hours or more of work per week. In bed most of the day. Actually in bed more than half of the person's usual waking hours of a day. In room or ward all or most of the day. Restricted (by physical or mental condition) to room or ward more than half of the person's usual waking hours of a day. Intermediate care beds. Beds whose occupants receive pro- vision of some nursing supervision, as well as care for personal needs. Long-term care institution. Offers residential, custodial, or personal care to unrelated persons for an average stay of 30 days or more. On duty or call 24 hours a day. Service or care available at all hours of the day or night. Ownership of facility. Type of organization with proprietary control of the facility and its operation. Paid for life care. Lump sum payment made at the time of admission for all care to be received for the remainder of the resident's life. Part-time employment. Less than 35 hours of work per week. Power-of-Attorney. A written document authorizing a person to act as an attorney or agent in behalf of another in financial matters. Resident. Person (patient) officially admitted to the institu- tion and for whom a bed is held on a 24 hour a day basis. Sit up in bed. To remain in bed in a sitting position, as opposed to the prone position. Size (facility). Number of beds permanently maintained for residential use by patients (residents). . Skilled nursing beds. Beds whose occupants received care (nursing and medical) provided round-the-clock by registered or licensed practical nurses as prescribed by an attending physician. Staff member. Paid employee of the institution. Type of care. The main type of care offered, e.g. care for psychiatric reasons, physically handicapped, mentally handi- capped, children, nursing care, or other reasons. Type of facility. Homes for the aged, children's facilities, facilities for the mentally and physically handicapped, psychi- atric facilities, and "other" facilities. Volunteer. Unpaid person offering services to the institution. U. S. GOVERNMENT PRINTING OFFICE : 1978—261-239/1095 Superintendent of Documents U.S. Government Printing Office Washington, D.C. 20402 Official Business PE N N STATE UNIVERSITY LIBRARIES