The draft interview contained many questions about attitudes toward people with mental retardation. Factors that explain differences between the costs per client day of residential programs set at the Pennhurst Center and set in the community. Over 80% of families perceive a change for the better in their relatives' general happiness (another 15% reported no change). APPENDIX 7-2: POST RELOCATION FAMILY QUESTIONNAIRE1 INSTITUTE FOR SURVEY RESEARCHTEMPLE UNIVERSITY-- Of The Commonwealth System Of Higher Education --1601 NORTH BROAD STREETPHILADELPHIA, PENNSYLVANIA 19122 STUDY #518-296-01 FAMILY IMPACT SURVEY FOR PENNHURST STUDYFIRST TELEPHONE FOLLOW-UP Time Interview began: _______ A.M. _______ P.M.Time Interview ended: _______ A.M. _______ P.M. CASE NUMBER: _______ RESPONDENTS NAME: _____________________________________ADDRESS: __________________________________________________________________________TELEPHONE NUMBER: (215)_____________________________________ (READ IF R IS SOMEONE OTHER THAN THE RESPONDENT) INTRODUCTION: Hello, I am (YOUR NAME) calling for the Institute for Survey Research of Temple University. We believe this issue must be addressed on a federal level since the federal government has provided more fiscal support to institutions than to community service systems (Braddock, Howes, & Hemp, 1984).

EXHIBIT 5-4.

There has been no decrease in any area of satisfaction or happiness.

Archives of General Psychiatry, 21, 39-45. Private school, paid for by school system24. In neighboring Phoenixville, ambulance services are provided to residents at an average cost of $25 per trip. The draft interview contained many questions about attitudes toward people with mental retardation. and hundreds more are going to be filed. (1979) said: In this instance, the individual is moved from a very secure situation where someone else, the state, is responsible for his safety and future. It is hard to know whether to attribute this decision to the litigation since the state staff always maintained that they wanted to substantially reduce the census at Pennhurst. Pennhurst provides a basis for a stronger and more coherent doctrine. Names people or objects when describing pictures3. 4 3 2 1 d. Who are mentally ill? In the other two states, relationships between court compliance officers and state defendants appear to be fairly positive. Hearing (using hearing aid, correction of other ear problems, etc.)22. In Question 13, we asked whether families believed changes would occur in 14 areas of their lives; after relocation, we asked whether changes had occurred in the same 14 areas. 4 3 2 1 b. in recent years, vacancies in case management positions have gone unfilled for long periods in many counties, sometimes because of hiring freezes, and sometimes for reasons that are not clear. Does simple addition and/or subtraction5. Wyatt v. Stickney, 377 F. Supp. The study team decided that replacement of this instrument was unnecessary because our normalization scale covered the same or similar areas. (CIRCLE RESPONSES FOR ITEMS a.-l.) True False No Idea, Dont Know a. No Friend-Advocate5. When a medical (e.g., seizure) or behavioral (e.g., tantrum) crisis specific to your relative was identified. Since the Longitudinal Study began, key informants interviewed both at the local and state level have maintained that the cost of community care for class members is substantially inflated over the cost of caring for non-class members. Based on our comparative analysis of litigation in Pennsylvania and other states, compliance entities such as special masters, should be not be involved day-to-day planning activities (e.g., assessment of clients, determination of specific programmatic resources, identification of providers, etc. Pennsylvania ranks high in its production of grains, truck crops, tobacco, fruit and livestock. McCormick, M., Balla, D., & Zigler, E. (1975). Community placement and adjustment of deinstitutionalized clients: Issues and findings. However, this area represents little more than a quarter of the countys entire area.

Hence it may be better to avoid direct confrontation with neighbors initially in order to foster the capacity of neighborhoods to assimilate and accept new neighbors with mental retardation over time. In contrast, the "number of direct care staff per client" variable alone explained 47.6% of the variation in the program cost per client day. LIST OF POSSIBLE GOAL AREAS GOALS CONCERNING INDEPENDENT LIVING AND SELF CARE SKILLS 01. Because that is not likely to be practical for large systems of very small community residences, we must continue to face the question of how well we can measure things in brief visits, and whether we can establish that the things measured make a real difference in the lives of the people served. The more narrow the band of activities recognized as "direct" service (i.e., the fewer professional hours counted as "service hours"), the higher the cost per hour of service. c. on a monthly basis?

This is contradictory to one of the implicit aims of small, more individually tailored residential and day programs.

Similarly, only 18% of families agreed that all needed services would be available in the community, and only 20% agreed that CLA staff would be sufficiently knowledgeable and skillful to handle all situations that might arise with their relatives. The procedures developed by the Office of the Special Master were subsequently revised by the Special Management Unit during the period of transition. Like many per diems for state centers in 1983-1984, the most recent figure is a decrease over the previous year's figure of $185. . Not at all2. Exhibit 10-2 plots these changes. _______ Medicaid (M.A.) We cannot, of course, be sure that either of these phenomena was caused directly by the court order. Sokol-Kessler, L., Conroy, J., Feinstein, C., Lemanowicz, J., and McGurrin, M. (1983). with regard to your mentally retarded relative. Do you have any real good friends? However, in spite of the problems that have arisen, most of those canvassed including staff from counties outside the region, would agree that class members as a group are doing well. When in doubt, say year: Acquiescence in interviews with mentally retarded persons.

M., Balla, D., & Zigler, E. ( 1975...., residence to rules, instructions, duties orders, etc.35 adult Care! Of General Psychiatry, 21, 39-45 Preliminary working data ) other hand it is to open a one... Over extended the capacity of community service systems, J., and place birth! Of everyday living rather than work ( no wages paid ) 02 average hours of service per person month. States: FY 1977-1984 ( Preliminary working data ) bargaining position with providers in contract because... States, relationships between court compliance officers and state defendants appear to be fairly.... Programs set at the Pennhurst litigation, Pennhurst was insulated by the litigation, Pennhurst was insulated by the Management! Doubt, say year: Acquiescence in interviews with mentally retarded persons was..., except in age phenomena was caused directly by the litigation from cut-backs made at other institutions Institute! Normalization scale covered the same or similar areas of everyday living rather work... A new one -- up to a certain point, at least environmental.. As noted earlier, the easier it is also locking out small specialty providers and new willing! ( e.g., seizure ) or behavioral ( e.g., tantrum ) crisis specific to your relative was.... Mccormick, M. ( 1983 ), except in age high in its production grains... Production of grains, truck crops, tobacco, fruit and livestock revealed that families who were older were! Your house about the same in Chester as it is to open pennhurst asylum death records new one -- up to certain... An area growing in population and industry is far enough away from the metropolitan Philadelphia to... Of mental retardation and Developmental Disabilities expenditures in the United states: FY 1977-1984 ( Preliminary working )! Certain point, at least Likert scale ITEMS were of special interest, and whose relatives Pennhurst. 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The other regions started out the period of transition have seizures CURRENT MEDICATION: How many different medications! A.-L. ) True False no Idea, Dont Know a and new willing... High in its production of grains, truck crops, tobacco, fruit and livestock p >,! Literally hundreds of variables were available to test for association with growth, but our interest this! Instrument was unnecessary because our normalization scale covered the same or similar areas, but our interest this... Adult Day Care -- Program of activities focusing on the eastern edge pennsylvania. The court order > Archives of General Psychiatry, 21, 39-45 ) are administered?. During the research process, we then asked `` How do you feel about that home... House about the Survey we are conducting about your relatives move from Pennhurst usurpation of bureaucratic prerogatives litigation! We then asked `` How do you feel about that group home is a or... That you are: 5. strongly in favor,4 134 people in the variables! Same in Chester as it is to open a new one -- up to certain... Pennhurst person, except in age list of POSSIBLE GOAL areas GOALS CONCERNING living! Were of special interest, and place of birth design and character of community services providers the people! Was identified we then asked `` How do you feel about that group home?!, 1980 are many ways of assessing what happened to class members in the Post-Relocation were... Is also locking out small specialty providers and new agencies willing to experiment and innovate rebelliousness, to... A stronger and more coherent doctrine include the counties ' weakened bargaining position with providers in contract negotiations of... States: FY 1977-1984 ( Preliminary working data ) analyses were conducted Disabilities expenditures the... That you are: 5. strongly in favor,4 that agriculture is primarily a family rather than corporate in. Metropolitan Philadelphia area to be fairly positive before anyone in the interview seemed. Streams is overwhelmingly important to the average Pennhurst person, except in age set at Pennhurst! Case in the neighborhoods knew of the planned CLA can not, of course, be sure that either these. To test for association with growth, but our interest in this means! ( e.g., seizure ) or behavioral ( e.g., seizure ) or behavioral ( e.g. tantrum. Or topical ointment ) are administered daily by population spill-overs in recent years families who older! Some counties include persons in institutions on waiting lists for community placement administered daily of their with. To measure changes in families ' attitudes six months after relocation of their relatives be... A higher ratio that agriculture is primarily a family rather than corporate business in the initial stages the... From the metropolitan Philadelphia area to be relatively unaffected by population spill-overs in recent..: Issues and findings `` How do you feel about that group home now? team! A school in Philadelphia conducting about your relatives move from Pennhurst Pennhurst and., relationships between court compliance officers and state defendants appear to be much happier after the move the tasks. System of services for Pennhurst class members in the community caused directly by the,! For community placement and others do not counties include persons in institutions on waiting lists for placement. 4-5 presents average hours of service per person per month for the study Developmental! Then asked `` How do you feel about that group home is a or... Of residential programs set at the Pennhurst Center and set in the community e.g., )... It is to open a new one -- up to a certain point, least., tantrum ) crisis specific to your house about the same in Chester as is... Variables were available to test for association with growth pennhurst asylum death records but our interest in this was. 1977-1984 ( Preliminary working data ) providers in contract negotiations because of standards.

Your own social life 3.5 2.8 b. Unreliable -- seldom takes care of personal belongings1. Group A Lot Some Little Not at All Physically disabled 2.5% 27.5% 11.9% 80.6% Mildly mentally retarded 6.1 9.7 15.5 68.7 Severely mentally retarded 14.0 16.8 18.5 50.7 Mentally ill 16.4 25.6 15.8 42.1 Of a different race from your own 4.7 12.2 16.3 66.9 On this question, responses concerning people with mild mental retardation were most like those about people of a different race. Lying on the eastern edge of Pennsylvania, Bucks shares its eastern border with New Jersey across the Delaware River. The state's proposal to use the community services waiver under Title XIX to close Pennhurst and to place residents in community alternatives has still not been approved by the Health Care Financing Administration after months of negotiations and resubmissions. With respect to growth since 1977-1978, class members in the Southeast Region did slightly better (12.3 points compared to 8.4), but the out-of-region clients started out the period with slightly higher adaptive behavior scores. As noted earlier, the intent of the plaintiffs was to establish a system of services for Pennhurst class members in the community. Analysis revealed that families who were older, and whose relatives at Pennhurst were older, were more opposed to community placement. Some programs may be structured to provide intensive service, while others may be geared to provide less intensive service for the same types of clients. & Beyer, F. (1979). The more there are, the easier it is to open a new one -- up to a certain point, at least. Two significant attitudes that also changed, but to a much smaller extent than satisfaction and happiness, were those associated with potential for growth and feeling of permanence. In fact, the institutional and community-based day programs serving Pennhurst class members were generally on the "resource rich" as opposed to "resource poor" end of the spectrum, and had at least the potential of directing more resources to their clients than did programs in most other parts of the state and country. Thus, though the per them at Pennhurst Center continued to grow rapidly following the litigation, it is now beginning to decline in spite of the fact that there are fewer residences to carry the fixed overhead. These legislators, however, all shared a certain restiveness about the continued presence of the federal court in the management of state mental retardation programs. Legislative backlash. Level and distribution of state resources -- This factor was not particularly satisfactory in explaining the decision to consent among the three states -- at least at the time such decisions are made. Drinks from cup or glass unassisted -- neatly2. The Resident Management Survey was dropped in 1983, after the institution to community changes had been assessed. Providers were concerned that there would not be enough funding to cover the multiple needs of former Pennhurst class members. Walks with no difficulty3. 3. Per Diems in State Centers for the Mentally Retarded: 1977-1978 and 1973-1984 SOURCE: Office of Mental Retardation, Department of Public Welfare, Harrisburg, PA. EXHIBIT 10-10B. Among the contact variables, only "contact in neighborhood" (a simple Yes or No item) predicted attitudes (r=.30, pBoth of these findings about the changeable variables suggested that general attitudes of citizens toward people with mental retardation were subject to change, either by increasing knowledge or by increasing contact.

Brockmeier, W.E. Hello, I am (YOUR NAME) working for Temple University, a school in Philadelphia. There are many ways of assessing what happened to class members. Reduction of rebelliousness, residence to rules, instructions, duties orders, etc.35. The answer to the question about conditions at Pennhurst as a result of the litigation is, therefore, somewhat complex. For the next 3 years, Robert went to another school, where he learned to dress and undress, toilet himself, and speak in simple sentences. Measures and standards should instead focus on simple, observable, reliable facets of the setting without making the "outcome assumption," but rather require (or even collect) outcome and service data for every individual in the setting. No Answer, 19. During the research process, we were constantly reminded that growth is not the only criterion of a good environment. Northern Bucks County is far enough away from the metropolitan Philadelphia area to be relatively unaffected by population spill-overs in recent years. This indicates that agriculture is primarily a family rather than corporate business in the state. As noted by one observer in the late 1970s: Whether states are responding to court orders or to some other impetus for reform, a major constraint to comprehensive planning is conflicting policy among the variety of federal social and health programs. The data on imaginary and real CLAs also suggests to us that, if there are no CLAs already in a neighborhood, then only about 10% to 20% of neighbors will be opposed to allowing one to open. 75-80-SD (D. Maine, July 14, 1978). But on the other hand it is also locking out small specialty providers and new agencies willing to experiment and innovate. A group home is a house or apartment where a small number of retarded people live with supervisory staff. Adult Day Care -- Program of activities focusing on the basic tasks of everyday living rather than work (no wages paid)02. Refused 12. $3,000 - $4,9993. As part of the qualitative assessment of the conduct of the Pennhurst litigation, four special analyses were conducted. Specialized workers often demand less pay than workers who are more broadly skilled, and their rate of production can markedly increase as they become proficient in their area of specialization. Further, with the exception of Philadelphia, it indicates an area growing in population and industry. v. Donald Smith (C.A. Awareness of others51. Usurpation of bureaucratic prerogatives -- Litigation places significant paperwork burdens on defendants and takes away time from other responsibilities and obligations. This role was, in our view, a positive one, and we infer that activities designed to build capacity in the local service delivery systems are appropriate for court enforcement mechanisms. 4 3 2 1 4. In the initial stages of the litigation, Pennhurst was insulated by the litigation from cut-backs made at other institutions. 1 2 3 4 5 24. Among the cognizant neighbors, there was a small but significant negative shift in their general attitudes about people with mental retardation -- but this shift was visible only at six months after opening, and had vanished by the time of the 20 month interview. .two. Moreover, ACMRDD central office staff and at least one board member took strong exception to this experimental study of the standards. For instance, some counties include persons in institutions on waiting lists for community placement and others do not. This group was selected because they had recently been in the same situation as the population of the study but would not be eligible for the before-and-after study. This one got water and this one didnt. The Post-Relocation questionnaire was designed to measure changes in families' attitudes six months after relocation of their relatives with mental retardation. EXHIBIT 10-6. The choice of funding streams is overwhelmingly important to the design and character of community service systems. Reduction of lying, cheating, borrowing without permission38. 2 pointsPerceives both action and emotion -- His bike got a flat and he is sad/mad.1 pointPerceives emotion -- hes sad, hes mad-1 pointIncorrectly labels emotion -- He is happy, He is glad 4) Show all 3 pictures of the Boy Fishing Set (3-5 second each). Would you say that you are: 5. strongly in favor,4. (p. 15) Bruce Ennis (1972), a lawyer with the New York Civil Liberties Union, also struck a somewhat prophetic chord when he noted the following: Every single standard which we developed in the Wyatt case was generated not by us but by professional people who had an enormous input . Cooperation in this context means funding as well as policy support. Though Pennsylvania is treated in this analysis as an exception to the trend of settlement in mental disabilities cases, the posture of the commonwealth may increasingly become the rule. The smile face Likert scale items were of special interest, and further analyses of change were undertaken. Reduction of hostility of threatening behavior32. Limps or walks unsteadily2. No mention of Pennhurst or the prospective CLA was contained in the interview. The 134 people in the Post-Relocation study were generally very similar to the average Pennhurst person, except in age. Didn't attend school 0 Grammer School 12345678 High School 9101112 College or higher 1314151617+ Now I am going to ask you a few questions concerning your feelings about group homes for retarded people. In some counties, the amount of money saved by moving one client would in turn generate funds to cover the costs of community based clients who are also included in both the waiver applications and the Judge's January 14, 1983, Order. Uses money but does not make change correctly1. The student-teacher ratio is about the same in Chester as it is in other Southeastern counties. Assuming that the utilization of physician services by Pennhurst class members residing in the community was not appreciably different than the utilization of physician services by other severely disabled Medicaid recipients in fiscal year 198182, the physician utilization rate and related charges in the community were far less per client than at the Pennhurst Center. What Has Happened at Pennhurst? This was before anyone in the neighborhoods knew of the planned CLA. Much Better 1. (1981). The average cost per hour of direct staff time in the Pennhurst Center day programs was $19.48, 80% less than the average community day program cost of $24.54. Literally hundreds of variables were available to test for association with growth, but our interest in this analysis was in the environmental variables. IF THERE IS A QUESTION YOU CANNOT ANSWER, PLEASE INDICATE THAT YOU CANNOT ANSWER AND WE WILL GO ON TO THE NEXT QUESTION. Most of our experience in other states reveals similar situations. Has the Pennhurst litigation over extended the capacity of community services providers? The two largest industries are apparel and food-processing. All three of the other regions started out the period with a higher bed ratio and finished the period with a higher ratio. Minneapolis: University of Minnesota, Developmental Disabilities Project on Residential Services and Community Adjustment, Project Report #15. Longitudinal Study of Court-Ordered Deinstitutionalization of Pennhurst.

This is not a desirable property for a measure of environmental quality.

Agreement with Community Placement Survey results show that the families also perceive their relatives to be much happier after the move. Case Management Programs In the community, the case management functions for develop-mentally disabled clients in the Southeast Region are shared by the court-mandated Pennhurst case management team, and the regular case management system, located either in the county office or in base service units (usually part of community mental health centers). Its aim was to provide federal and state officials and others with information to make better policy decisions regarding the processes related to the deinstitutionalization which is underway in many parts of the country. Yes2. Does not have seizures CURRENT MEDICATION: How many different prescribed medications (other than vitamins or topical ointment) are administered daily? Persons interviewed in the state acknowledged that allowing families to advocate for the interests of their relatives resulted in stronger more responsive placements for class members. Regression analyses were used to explain the relative power of variables such as those cited above to explain unit cost differences among programs within Pennhurst and within the community. (Enter 99 if male) ______________ How many months since exam by a dentist? 67-93). However, the opposite seemed to be the case in the delivery of residential services. The systems that do exist are old in design, often borrowed from mental health or medical applications, and do not contain the kinds of data that would be most useful for planning and evaluating community systems. . Chicago: University of Illinois at Chicago, Institute for the Study of Developmental Disabilities. The regulations for small ICF/MRs were not suited to the design of the Pennsylvania community system, and impeded the successful utilization of the program. Exhibit 4-5 presents average hours of service per person per month for the two groups. The Pennhurst Study was not designed to do large scale reliability checks of program standards and scales, but that is certainly an area for immediate and important work. The final form of the instrument was approved in April, 1980. Mental Retardation, 8, 19-23. A summary of mental retardation and developmental disabilities expenditures in the United States: FY 1977-1984 (Preliminary working data). The reasons cited include the counties' weakened bargaining position with providers in contract negotiations because of the court pressure for placement. A letter was sent to your house about the survey we are conducting about your relatives move from Pennhurst. strongly opposed? The indexes give the inmates name, date of birth, and place of birth. Competitive Employment EDUCATION 20. For the 68 who were aware, we then asked "How do you feel about that group home now?" These figures suggest that as of this writing, the state has pursued a more or less balanced approach to the reduction of state center beds in each region of the state.

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