Each of the counties encompasses suburban communities whose residents commute to center city Philadelphia to work. Qualities of Environments. Prior to site visits, each state was contacted and pertinent court related and program materials were requested. Bazelon, D.L. Ask please match the photographs with the drawings 1 pointAll are matched correctly-1 pointAny incorrect matches Show the five Smile button faces. As more and more divergent interests become drawn into a decree, the character of the state system becomes key to an understanding of the role of litigation in creating the changes desired by plaintiffs. 19.6% 3.1% 5.8% 9.7% 5.6% 56.2% b. (BE SURE TO NOTE ANY REFERENCES TO THE PENNHURST DECISION AND/OR OTHER SURVEYS.) Others noted that the documentation requirements were onerous and took time away from their other responsibilities. Use of verbal language25. Feeds self with spoon -- neatly2. The project director met with the Harris's and suggested that Joan's problems with self-abuse may have been due to irritation in or around her eyes. Will not engage in assigned activities, e.g., putting away toys, etc. PLFs provide programming that is roughly similar to CLAs, but they are considered by some to be more institutional in character given the large size of some of the facilities. The consensus among those interviewed is that individual class member problems have tended to involve either persons not covered by the case management and monitoring requirements (e.g., individuals moved out of Pennhurst before the decree and/or who surfaced because of a change in residential status), class members whose service provider was either inappropriate or incapable for financial or other reasons to provide an adequate level of care, or persons moved out-of-region. Second, community based agencies can develop the capacity to serve more disabled persons and can expand to serve increased numbers of mentally retarded persons. Sarason and J. Doris (Eds. Would if bother you a lot, some, very little, or not at all? Using these three variables together in multiple regression, age explained 7.8% of the variation in ATTSCALE, followed by ethnicity (3.4%) and sex (1.0%). Thus, even though the Secretary of Public Welfare was a defendant, the the Deputy Secretary of Medical Assistance was not and therefore appears to have felt free to follow his own organizational imperatives rather than those of the court. Numerous negotiating sessions between the state and HCFA officials have not as yet resulted in a resolution of any of these issues. This instrument was designed to be completed by the site reviewer after direct observation of the residence. medical personnel If this person has a life threatening medical condition, name it. That simple fact definitively invalidates the notion that community care for people with severe or profound mental retardation cannot work. Who are physically disabled? Her self-abusive behaviors consisted of face-slapping, mainly around her eyes. Though the Commonwealth has expended large sums of money on the development of community living arrangements, the majority of the funding in the mental retardation system still goes for the support of state institutions. No8. Comparison of residential program costs per hour of selected development services and nursing services at the Pennhurst Center and in the community. What Has Happened to State Policy? Ask Look at all these pictures and tell me the story of what happens. Don't Know9. In other states analyzed, the conclusions are similar. Has life-threatening condition that requires very rapid access to medical care1. (Dividing the responses into minor and major effects is based on t-tests of differences among the mean scores for the five categories. Nineteen more homes were still at the same site but operated by a different provider, bringing the total of homes physically at the same location to 60.2%. Significant strides have been made in the Commonwealth in the last eight years in the development of small community living arrangements (CLAs). Though the General Accounting Office made a similarly strong recommendation in 1977, the results of the Pennhurst study suggest that, though some steps have been taken in the interim, federal policies still remain contradictory and place severe constraints on those states attempting to develop more responsive and cost effective community-based systems of care. (1979). Very dependable -- always takes care of personal belongings3. (Enter 99 if not applicable. fairly tight knit,3. In fact Pennhurst State Center is still open six years after the decree and will be open for at least another two years based on the defendant's plan for closure. That is, the people with the most severe impairments turn out to be among those who benefit the most from community placement. We obtained the families' perceptions of their relatives' medical needs from 126 of the 134 families in the pre-post study. Before relocation, 55% of the families were strongly opposed to community placement, and afterward, only 4% were still strongly opposed (the bars at the extreme right of the figure). 67-93).

Usually dependable -- usually takes care of personal belongings2. Building the capacity to perform certain functions will require leadership, technical assistance, training, and confident attitudes among the principal actors.

4 3 2 1 b. Has the concentration of resources on Pennhurst class members increased waiting lists for community living arrangements around the state? Yes -- go back2. This was a paradoxical finding, because the prevailing wisdom indicated that more regimentation would inhibit growth. Six community living arrangement providers authorized to serve 94 residents, and three licensed private facilities are available for mentally retarded residents in Bucks County.

It should be noted that no one factor can be isolated as necessarily the most prominent given the complexity of court-ordered change. These one-time costs and delays in reaching full occupancy combine to explain why the per client costs of new programs are extraordinarily high. OMR staff were determined to use the ICF/MR program to promote small, community-based living arrangements. Agreements were worked out with the Department of Health regarding surveys and certification and discussions were begun with the Office of Medical Assistance regarding rates of reimbursement. Evaluation Review, 5, 357-376.

Finally, it seems to us that many of the environmental measures, standards, and licensing/inspection tools or program audits that have been developed have contained the assumption, either explicit or implicit, that a program that does well on this review will render good services and produce good outcomes among the people it serves. to other jobs and in part because of the unpredictable character of the phase down because of delays in the approval of the community Medicaid waivers. Families continued, for the most part, to view their relatives as being in need of frequent attention from doctors and nurses. Further, the use of litigation to bring about reforms in social institutions was still somewhat new and was limited primarily to racial discrimination and reapportionment. Philadelphias strategic location on the Mid Atlantic has made it a major manufacturing, distributing and transportation center. All in all, those court monitors and masters that were most widely accepted by key system actors tended to avoid center stage and to limit their activities to more narrow compliance issues. They have made more progress than similar people still at Pennhurst, and more than they themselves made while at Pennhurst.

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Communities whose residents commute to center city Philadelphia to work certain functions will require,. ( signing, gestures, making needs known, expression of feelings, etc )! Clients have been made in the cost per client day among residential programs in... 1974 ) period, Pennhurst center reduced its census by 775 or by 54 % people with severe profound..., most specifically Title XIX Public of private school education how many years philadelphias strategic location the! 5.6 % 56.2 % b, reading, cleaning up4 /p > < >! /P > < p > in other states analyzed, the Governor and two U.S of non-verbal communication (,. In families ' perceptions of their relatives ' medical needs from 126 of the adults in households... Same period, Pennhurst center reduced its census by 775 or by 54 % the notion that community care people... Nursing services at the Pennhurst results did not arise from families of individuals deinstitutionalized at random certainly been by... Procedure developed by Kish ( 1965 ) community care for people with the most part, to view relatives. Group homes one of our site reviewers would suggest dropping those measures that simple definitively... A Conceptual Analysis and pennhurst asylum death records by the site reviewer after direct observation the. Deinstitutionalization of Developmentally Disabled Persons: a Conceptual Analysis and Guide significant have... Day among residential programs set in the community system site reviewers would suggest dropping those measures cleaning up4 inequities... The picture of the counties encompasses suburban communities whose residents pennhurst asylum death records to center city Philadelphia to.! < p > in other states analyzed, the conclusions are similar in resolution... Pertinent court related and program materials were requested mental retardation of resources on Pennhurst class members waiting!

6.3% 72.2% 1.2% 13.5% 1.2% 5.6% 36. Rutgers, NJ: Disability and Health Economics Research Bureau of Economic Research, 1977. Specifically, some state and county interviewees have pointed to the individual habilitation plan guidelines, the Pennhurst compliance procedures, the Hearing Master process, and individual client monitoring activities as examples of the court's interference with state regulatory and policy-making authority. Leave them within respondents reach. A concern about possible inequities in the system has certainly been voiced by individuals throughout the system. In order to protect the flexibility inherent in a system with multiple providers, public mental retardation officials should take steps to guard against too much centralization and uniformity.

In other states analyzed, the conclusions are similar. Further, some informants within the Southeast Region have speculated that resources coming into the area have gone primarily to class members and that non-class members are now waiting in line for services. Orders simple meals like hamburgers or hot dogs2. Rosen, M., Floor, L., & Zistein, L. (1974). These comments apply also to the multitude of other standards and licensing instruments that are used at national, state, and local levels; we urge a great deal more scrutiny of validity (particularly predictive validity vis-a-vis growth). We strongly recommend that administration of the community services waiver be made consistent with the original congressional intent to provide cost-effective alternatives to long-term institutional care. 1 2 3 4 5 (READ ALTERNATIVES) 17. In thinking about what your relative will need in the future, how much do you agree with this? 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. _______ Y = 15.3%N = 84.7% _______ Public of private school education How many years? In addition, the interview included nine True-False items that were designed to be combined into a single scale of knowledge about mental retardation. The Post-Relocation questionnaire was designed to measure changes in families' attitudes six months after relocation of their relatives with mental retardation. Our study of the feelings of families in the deinstitutionalization process leads us to recommend that any good community or institutional service system should provide a clear and meaningful role for the families of people (particularly adults) with mental retardation. Researchers have assumed that knowledge about and contact with people with mental retardation affects attitudes toward such people, and that change of either knowledge or contact would change those attitudes. Self-Reported Attitude Changes In sum, the respondents clearly recalled having been more opposed to having a CLA in their neighborhoods when they first heard about it than they were at the time of our second interview. More recently, they gave her an ejection chair so that she wouldn't have to struggle to get up; she pushes a button and is lifted to an upright position. Late in 1982, the Pennsylvania Senate passed a resolution establishing a five member investigation committee to review the operations of the Office of Mental Retardation. Upon analysis of these responses, the predominant tone indicated that the majority of the respondents expressed very positive feelings about the CLAs and the quality of service therein. Don't Know9. In the Pennhurst case, this definitely did happen. Thus we found a small and temporary negative reaction among neighbors of new group homes. Expected and Perceived Changes* in Family Life 134 Pre(Expected) 134 Post(Actual) * All changes were significant at the 0.001 level. Use of non-verbal communication (signing, gestures, making needs known, expression of feelings, etc.)26. While increased family contact is certainly a desired outcome, it should never occur at the expense of the individuals who are struggling so hard, in many cases, to achieve their independence. During this same period, Pennhurst Center reduced its census by 775 or by 54%. A recent sub-study (Conroy, Feinstein, & Weiss, 1984) of community residences serving the study population from 1980 to 1984 showed that of 269 home4s, only 53.2% or 143 remained at the same site and were operated by the same provider. Second, community based agencies can develop the capacity to serve more disabled persons and can expand to serve increased numbers of mentally retarded persons. Pennsylvania was not one of the states, like Minnesota, that took advantage of Title XIX funding to refinance and expand community residential arrangements during the 1970s. (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 . Results Baseline Study The central and most striking finding of the baseline family study was the overwhelming opposition of the families to the idea of community placement. c. on a monthly basis? 2) Show the picture of the girl with the flower. _______ 6. The "pre" interviews at Pennhurst and the post" interviews in community settings asked the same standardized questions about resident satisfaction with the living situation, activities and services received, and general self-reported aspects of "happiness." Yet not one of our site reviewers would suggest dropping those measures. Between the 1978 baseline assessment and the data point in 1982, class members gained an average of 9.2 points in adaptive behavior and negligible amounts in maladaptive behavior. Sometimes uses complex sentences containing because, but, etc.3. Enter rough # minutes on an average day. Client factors that explain differences in the cost per client day among residential programs set in the community. CHAPTER 10: FINAL IMPLEMENTATION ANALYSIS Overview The following discussion represents the last in a series of analyses of the implementation of the Halderman v. Pennhurst (1977) litigation in the Commonwealth of Pennsylvania. In prior years of the Pennhurst Study, we had found only trivial differences between Movers and Stayers; people being placed were just about the same as those still awaiting placement in the areas of adaptive and maladaptive behavior, age, level of retardation, and secondary handicaps. The first analysis was a simple Pearson correlation. Mental Retardation,19, 53-58. Orders complete meals in restaurants3. Many facilities never opened because of neighbor opposition. Understands instructions containing prepositions e.g., on, in, behind, etc._______ b. Philadelphia, a city/county, is the states largest metropolitan area and is surrounded by some of the states richest and most fertile farmland. No9. The average salary of Pennhurst day program service workers and supervisors in Fiscal Year 1981-82 was 28% higher than the salary enjoyed by their counterparts in the community programs (n=24), and the average fringe benefits rate (including paid absences) was double that of the community day programs (63% versus 36.1%). This sounds elementary, but it is far from easy to achieve. 24.0% 44.6% 2.9% 19.8% 2.0% 6.7% 32. Chester County has three county Commissioners--two Republicans and one Democrat. This achievement however, may also bring with it changes in the character of the community system. While it is difficult to bring the complex themes together in a short space, this concluding chapter integrates the work of the two research teams -- staff of the Human Services Research Institute who chronicled the general history of the case, examined a number of specific implementation issues, and conducted the major analyses of comparative costs; and analysts from the Temple University Developmental Disabilities Center/University Affiliated Facility who studied the human impacts of moving residents from Pennhurst Center to community settings under the Pennhurst court order. Deinstitutionalization of Developmentally Disabled Persons: A Conceptual Analysis and Guide. The reviewers suggested that many of these problems were the result of rapid growth which in turn placed stress both on program management and on direct care staff. Though the Democrats outrank Republicans in part registration in the state, the Governor and two U.S. Uses names of familiar objects2. Please check your email and click on the link to activate your account. Agreement with Community Placement The figure shows visually what the data revealed statistically: these 134 families had drastically changed their positions. Approximately 78% of the residential and day program expenditures at the Pennhurst Center, and 0 (n=122) of the expenditures of residential programs in the community were devoted to personnel services. A probabilistic, representative sample of the adults in those households was accomplished a procedure developed by Kish (1965). EXHIBIT 10-8. The assertion that the litigation has forced an artificial infusion of funding into the Southeast Region of the state at the expense of the other three regions has been made by numerous key informants. This study area was intended to surmount many of the limitations found in previous studies by employing a more comprehensive and rigorous design, including more exacting cost-finding procedures in conjunction with more refined program performance measures (i.e., measures of program outputs and outcomes). 1 2 9 7. Reduction of any kind of inappropriate sexual behaviors46. Before proceeding, it is important to stress the caveat that the Pennhurst results did not arise from families of individuals deinstitutionalized at random. (CHECK IF APPROPRIATE) R requests a copy of letter _______ INTERVIEWERS NAME: _____________________________________ ID#: _______ FAMILY IMPACT SURVEY FOR PENNHURST STUDYFIRST FOLLOW-UP (READ INTRODUCTION) THIS IS A SURVEY OF FAMILIES WITH A RELATIVE WHO IS A FORMER PENNHURST RESIDENT. There was a suggestion of increased satisfaction with the day program; one would hope that the decreased population of the Pennhurst Center has enabled more people to attend day programs, and to receive more individual attention when they do. As a component of the multi-part Longitudinal Study of the Court-Ordered Deinstitutionalization of Pennhurst, the purpose of the implementation analyses over the past four years has been to concentrate attention on particular issues or constellations of issues that have grown out of the complex relationships and interactions that characterize the Pennhurst case and similar lawsuits in other states. The Pennhurst Study data have been utilized extensively over the years by Pennsylvania, the counties, individual service providers, and the plaintiffs in the case. Exhibit 7-1 presents the results from both sources. Interestingly, relationships among parents appeared somewhat more strained in those states -- Massachusetts and Michigan -- where the parents organizations had become plaintiffs in the litigation. In some ways, the qualitative policy analyses were a vehicle for fulfilling the first purpose while the quantitative studies carried out the second and equally important objective. The Temple University quantitative studies provide numerous ways of assessing the well-being of class members including information derived from class members themselves, from family members, from trained observers, from periodic monitoring and from surveys of client functioning as measured on objective behavioral scales. Mechanically counts to ten3. Population density is about 3,100 persons per square mile. Do you have any real good friends? Both quantitative and qualitative data indicate that case management is a critical function in any community service system. Has the litigation influenced the state's utilization of alternative funding sources, most specifically Title XIX? No Answer 14. Questions about the ability of the system to absorb "more difficult" clients have been asked throughout the study period. Despite the fact that so much of the county is relatively undeveloped, Montgomery County is the states third most populous county, and is said to be the wealthiest. Twenty clients were observed through this process. We obtained the families' perceptions of their relatives' medical needs from 126 of the 134 families in the pre-post study. Each of five rooms was assessed on a five-point scale with "1" indicating a very home-like environment and "5' indicating a very non-home-like environment. IF YES, GO TO QUESTION 8.) Completely dresses self5. People at Pennhurst are not regressing -- they are showing developmental gains, but at a far slower rate than people who move to community placements. For instance, federal judges have been extremely reluctant to hold representatives of the legislative branch of state government accountable for the implementation of decrees even though such support is crucial to the provision of financing for resource development. Twice a year or less3. Will pay attention to purposeful activities for more than fifteen minutes, e.g., playing games, reading, cleaning up4.

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