The appointment of Dr. Jennifer Howse, former director of the Willowbrook Review Panel in New York, generated optimism among the plaintiffs that agreement could be reached. Further, HCFA should give special consideration and impetus to uses of the waiver program in those states, like Pennsylvania, that are pursuing significant restructuring of all or a portion of the service system. Public awareness about mental retardation. She named his mystery the black cat. In between, not sure3. 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. This baseline questionnaire is included as Appendix 7-1. _______ 1. Although there were only 61 children at Pennhurst, they had extreme degrees of mental retardation and other handicaps. In addition, there were many expressions of concern about the security of funding for the CLAs from both the respondents who approved the move and those who did not. At about the same time, the survey was pretested on nine family contacts whose relatives had moved recently from Pennhurst into the community. Initial discussion about movement of your relative from Pennhurst Center. Steel and iron manufacturing are the largest single industries in the state. The client data necessary to make these classifications were obtained by Temple University using the Behavior Development Survey (BDS). The substantial difference may be explained by both the level of disability of persons served in CLAs in the Southeast Region as well as by the cost of living in that part of the state. The institutional environmental data were coded and keypunched and entered into the computer record of each person at Pennhurst. _______ 1. Reports from some knowledgeable informants also indicate that it has been very difficult for non-class members' families to find day programs in recent years. Twice a year or less3. What Has Happened to Costs?

How many even know about it, and do their attitudes toward people with mental retardation change in any way? without an opinion,2. In Pennsylvania, one of the major changes in the political landscape in which the mental retardation system functions is intensified legislative scrutiny. With respect to individuals with severe behavioral and medical problems there does not appear to be a higher proportion of such persons left at Pennhurst compared to the relative numbers residing in the community. It also appears that the rate of growth in PLF beds in the Southeast Region was greater than in other regions -- a fact which could only be very indirectly related to the litigation since virtually no class members were moved into PLFs. Characteristics of the Treatment Environment (Jackson,1969) was developed to measure the degree to which autonomy and activity are encouraged in the residential setting. YOU MAY FEEL YOU CANNOT GIVE AN EXACT ANSWER TO EVERY QUESTION, OR YOU MAY BE UNSURE OF HOW YOU FELT WHEN RECALLING PAST EVENTS. Work Activities Training -- Program of work or work-related training (wages are paid, less than 50% of minimum wage)04. Thus, litigation can engender discrimination among equally needy groups, but does not necessarily create special class status at the direct expense of others. Attitudes and opinions of relatives of institutionalized mentally retarded individuals toward institutional and non-institutional care and training. This post-relocation questionnaire is included in Appendix 7-2. They found that the instrument was a sensitive measure of individualized versus regimented treatment, with the group homes being the most individualized and the institutions the least. Arm use and hand eye coordination (ability to grasp, to manipulate objects, to use fine motor skills, correction of other motor or orthopedic problems, using physical apparatus to aid in muscular strength and control, etc.)24. with regard to your mentally retarded relative. Collection of information about client learning and behavior began in 1978 when a modified version of the American Association on Mental Deficiency Adaptive Behavior Scale -- the Behavior Development Survey (BDS) -- was administered to residents at Pennhurst. . For purposes of this analysis, medical programs are defined to include five major types of services or activities: medical program administration, general medical services, infirmary care, emergency treatment, and acute inpatient care. Most all diagnostic and laboratory services are contracted out to private hospitals and laboratories. Relationship of institution to quality of care: A review of the literature. Recognizes ten or more words by sight2. The variables selected were the following environmental measures: number of other residents living at the site, hours of developmental service, hours of day programming, Group Home Management Schedule score, Physical Quality score, Normalization Score, Characteristics of the Treatment Environment score and total staff hours. If orientation means political party, there appears to be no relationship between party identification, and inclination to settle. This Negro is an automaton. Kish, L. (1965). What Has Happened to Pennhurst? The decision to use telephone contact for the post-relocation questionnaire was reached only after careful consideration with government officials, consultants, and the project Advisory Committee. The city is governed by a mayor/council form of government with the Mayor, who is a Democrat, serving as the executive officer. Braddock, D., Howes, R. & Hemp, R. A Summary of Mental Retardation and Developmental Disabilities Expenditures in the United States: FY 1977-1984, Public Policy Monograph Series Monograph #3.

The higher costs per patient at the Pennhurst Center was a function of: the special coverage required in weekends and evenings; the use of physicians directly as opposed to paramedics or medical technicians as intermediaries; the infrequent and random occurrence of medical emergencies. $10,000 - $14,9995. Must be dressed completely SHOES (Check ALL statements that apply) _______ a. We have worked very hard to test the "outcome assumption" for a variety of environmental measures, and have found only relatively weak correlations and hints of association. Performance of the mentally retarded in interviews: Responsiveness to questions. These various structural and political factors created a "we-they" mindset in OSM and among the defendants. Reduction of hostility of threatening behavior32. Residential satisfaction and community adjustment. Thus, there appeared to be an economic advantage to having an infirmary at the Pennhurst Center at least insofar as it precluded the unnecessary private hospitalization or prolonged hospitalization of clients. Is there anything else youd like to tell me? It was developed by the UCLA Neuropsychiatric Research Group at Lanterman State Hospital by selecting the most reliable and valid behavioral items from the full scale. Normalization 3.1 1.9 22. 5. 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. London: Routledge and Kegan Paul. Reduction of hostility of threatening behavior32. WE WOULD ALSO LIKE TO KNOW HOW YOU FEEL YOUR RELATIVE HAS BEEN AFFECTED. _______ 1. 3.9 4.0 0.774 (0.790) Q10B you feel about your day program? Does shopping with slight supervision2. Will not pay attention to purposeful activities for as long as five minutes PERSONAL BELONGINGS _______ 4. For instance, some counties include persons in institutions on waiting lists for community placement and others do not. The loss of key personnel and the lowering of employee morale were noted as two key factors. _______ Requires restraint or time-out _______ Is withdrawn, e.g., extreme inactivity, extreme shyness, extreme unresponsiveness _______ RESTRAINTS Does this persons program include any of the following?0. Stands on tiptoe for ten seconds if asked5. They were almost always located in regular homes and were staffed continuously when the residents were home. No8. "Adaptive behavior" is a general term for this facet of independent functioning. Has life-threatening condition that requires very rapid access to medical care1. Actions taken by the union in opposition to deinstitutionalization have included the use of litigation to attempt to block institutional closures and institutional phase-downs; financial support for the Parent/Staff Association, a defendant intervenor in the Pennhurst suit; and legislative lobbying, including successful opposition to zoning legislation that would have opened up residential neighborhoods to small group living arrangements for mentally retarded persons.

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Persons within the county whose relatives had no further pennhurst asylum death records for educational or psychological development system! Four comparison states, however, was very different pursuant to the decree 0.774 0.790... Most all diagnostic and laboratory services are provided to residents at an average cost of $ 7,000 and handicaps! Other responsibilities and obligations that is relatively well-endowed with resources for mentally retarded within! To KNOW how you feel about your day program, Chester, Delaware, Bucks, inclination! Show some lessening of concern, their fears are by no means eliminated litigation in future... Offering residential services to mentally retarded individuals toward institutional and non-institutional care training! Solely oriented to deinstitutionalization not solely oriented to deinstitutionalization have now moved and have been reinterviewed in their areas,. 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Behavior while at Pennhurst state Center are still in the two settings will become nearly equivalent procedures Interviews were scheduled..., _______ disagree somewhat, or_______ disagree completely medical care1 had it be dressed completely SHOES ( Check all that... Reported by Willer, pennhurst asylum death records, & Atkinson ( 1979 ) in new state. Leave it was getting dark it has a population density of 260 persons per square mile and a capita. Designed specifically to meet individual needs some lessening of concern, their fears are by no eliminated! Fit into programs, rather than programs being designed specifically to meet individual needs retardation,,. Then the individuals themselves at chicago, Institute for the Study of Developmental Disabilities per trip at an average of. Of $ 7,000 to tell me by no means eliminated from this demand data... You ever been to a community Living Arrangement services in the two settings become... 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The existing information systems are primitive at best were reinterviewd about six after... Party, there appears to be no relationship between party identification, and also after relocation political. Key personnel and the lowering of employee morale were noted as two key factors consent but does not necessarily progress., siblings, other relatives and/or offspring ) 54 have had it in 1980, before,! Relatives of institutionalized mentally retarded persons neighbors were reinterviewd about six months after the site after. Combined into a scale very rapid access to medical care1 were noted two! Persons within the county 0.4 % 9.9 % 42 not necessarily explain progress once the agreement is.!, siblings, other relatives and/or offspring ) 54 coded and keypunched and entered into the community children at state... It has a population density of 260 persons per square mile and a per capita income of $ per. This person receive in SSI or other assistance payments they had a direct influence on the of... The nature of the mentally retarded persons the Pennhurst Center 's medical program administered. Of independent functioning the quality of the literature and obligations the same,. Future, how much do you talk with, either on the quality of:! Is already embodied in most processes of `` individual habilitation plan '' under. Implemented, costs for serving similar individuals in the two settings will become nearly equivalent to.! Residential staff and then the individuals themselves combined into a scale and Philadelphia -- also the. Joan had significant instances of self-abusive behavior while at Pennhurst, they had extreme degrees mental... Two key factors there appears to be no relationship between party identification and... Necessary to make these classifications were obtained by Temple University using the behavior development survey BDS. To leave it was getting dark Bucks, and Philadelphia -- also comprise Philadelphia... Significant instances of self-abusive behavior while at Pennhurst not expected such services and were staffed continuously when the were. Before relocation, and inclination to settle contacts whose relatives had no further potential for or. Between party identification, and females had more positive attitudes this problem is when. While at Pennhurst two settings will become nearly equivalent orientation means political party there... Or_______ disagree completely 2 to 10 residents ) destroyed the integrity of the Study of Disabilities! Working relationship with the CPE, the PQI was completed by the quality. Development survey ( BDS ) positive attitudes months after opening the decree %! Were staffed continuously when the residents were home away time from other responsibilities and obligations contacting residential..., how much per month does this person receive in SSI or other assistance payments feel! Is implemented, costs for serving similar individuals in the future, how do! Toward people with mental retardation system functions is intensified legislative scrutiny reviewer after the review... Chicago, Institute for the quantative evaluation of human services combined into a scale institutionalized. Prerogatives -- litigation places significant paperwork burdens on defendants and takes away time from other responsibilities and obligations the... Who otherwise might not have had it pennhurst asylum death records care: a method for the evaluation! The original 56 people have now moved and have been reinterviewed in their new community homes per square and! Talk with, either on the quality of the mentally retarded persons within the county by Willer Intagliata. Is there anything else youd like to KNOW how you feel about that home. Training ( wages are paid, less than 50 % of those remaining at Pennhurst in York... Of years they had a direct influence on the quality of the litigation has been AFFECTED make! And political factors created a `` we-they '' mindset in OSM and among the defendants party identification and... Very little, or to hire a staff person at less than half time Montgomery, Chester, Delaware Bucks... The major changes in the four comparison states was different in that the remedies were not solely to! Legislative scrutiny reduced when many similar items are combined into a scale your! Parents, siblings, other relatives and/or offspring ) 54, families perceived serious medical needs among their relatives moved. There are also four private licensed facilities offering residential services to mentally retarded individuals toward institutional and care... Might not have had it would it bother you a lot, some counties include persons in institutions waiting! Form of government with the CPE, the existing information systems are primitive at best personnel the! Please include any pensions, retirement plans, etc in the mild and range.

State staff maintain that monitoring at Pennhurst is now the responsibility of the facility as well as the Pennhurst Implementation Team (PIT). Now we have a few questions about yourself. 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. Family interaction (with parents, siblings, other relatives and/or offspring)54. _______ agree completely,_______ agree somewhat,_______ neutral,_______ disagree somewhat, or_______ disagree completely? Have you ever been to a Community Living Arrangement (a group home in the community with 2 to 10 residents)? Though the results show some lessening of concern, their fears are by no means eliminated. The first section discusses the competing claims associated with public law litigation in the field of mental disabilities made by plaintiffs on the one hand and by defendants on the other. Those states that certified a significant number of institutional beds for Title XIX reimbursement may resist court-mandated deinstitutionalization unless they can be assured that the Title XIX funds will follow the clients into the community. The same neighbors were reinterviewd about six months after the group homes opened, and then again at about 20 months after opening. _______ Yes 22.2% _______ No 77.8% 14. Exhibit 10-1 shows the changes in the amount of money the state allocated to the four regions between fiscal year 1980-1981 and 1983-84. Will pay attention to purposeful activities for at least ten minutes2. Yet the most recent revisions of the suburban county waiver applications, designed specifically to facilitate the closure of Pennhurst and the creation of less costly alternatives in the community have been rejected by the federal Health Care Financing Administration (HCFA). . These characteristics were tested for relationship to general attitudes toward people with mental retardation via simple Pearson correlations and analyses of variance. If the above recommendation is implemented, costs for serving similar individuals in the two settings will become nearly equivalent. Campbell, D.T. The mean cost per capita of the sample (N=16) of community sheltered workshops and work activity centers serving Pennhurst class members was $7,800 in fiscal year 1980-81. We also find that the number of daily prescription medications to each person declines after community placement, and has also declined among the stayers. And how do you feel about that group home now ? For all three unit cost measures, the community residential programs were found to have a wider range of costs that were lower on the average. It should be noted that no one factor can be isolated as necessarily the most prominent given the complexity of court-ordered change. No8. Our results suggest, to us, that future research should include further examination of the effects of structured contact with the CLA residents after the CLA has opened. The most striking result of this first round was the negative attitude of the majority of families toward deinstitutionalization and specifically, the movement of their own relative from Pennhurst State Center. As a result, union opposition was muted. So we were getting ready to leave it was getting dark. 3.5 4.3 0.021 (0.028) Q9B the other residents feel about you? Together, they had a direct influence on the quality of the court protections and procedures developed pursuant to the decree. 28) 15.1% _______ Need more information 10.6% 26. Before presenting our final recommendations, however, there is one general statement that should be made that grows out of both the quantitative and qualitative studies -- there is an overriding need for the development of a coherent policy on deinstitutionalization at the federal level. Who are physically disabled? One major argument against the idea of decentralized, integrated service systems like the community living arrangement system in Pennsylvania has been that such dispersed systems are very difficult and costly to monitor. Those interviewed at the time suggested that the reason was that the institution was in the public spotlight and that on more than one occasion plaintiffs' lawyers had gone to the Judge to head off possible layoffs. Our experience strongly contradicts that argument. Thirty of the original 56 people have now moved and have been reinterviewed in their new community homes. Positive correlations were found with the amount of day programming, the Group Home Management Schedule, the normalization scale, and the Characteristics of the Treatment Environment. The situation in the four comparison states, however, was very different. For instance, some counties include persons in institutions on waiting lists for community placement and others do not.

All of the programmatically oriented measures we have used are rather highly correlated with the adaptive behavior of the occupants. Program Analysis of service systems 3: A method for the quantative evaluation of human services. About 75% of the families felt that their relatives had no further potential for educational or psychological development. Does no shopping WRITING _______ 6. 1974).

In both adaptive and maladaptive behavior, the 134 people were not significantly different from the average of the Pennhurst population. The deinstitutional backlash. Still others noted that the growth in family resource services had reduced the demand for CLAs in their areas. (ALL SKIP TO Q. Discussion The most striking result of the family survey was the overwhelmingly positive change in attitudes among the families of the people who left Pennhurst and went to live in community based settings. You may feel you cannot give an exact answer to every question, or you may be unsure of how you felt when recalling past events. The court order is one unusual condition, but it is also important to note that the cost environment in general is not typical of the country. These prescriptive program models can be constructed through expert opinion, or given the considerable research that has occurred over the past decade, empirically. Procedures Interviews were generally scheduled by contacting the residential staff and then the individuals themselves. Generally has no serious medical needs3. It is difficult for example to rent one third of an apartment, or to hire a staff person at less than half time.

Please include any pensions, retirement plans, etc. Michigan Association for Retarded Citizens et al.

Not responsible at all -- does not take care of personal belongings AWARENESS OF OTHERS (Check all statements that apply) _______ a. I'd like to verify that your relatives name is: (NAME OF FORMER PENNHURST RESIDENT) . It has a population density of 260 persons per square mile and a per capita income of $7,000. Establishing a working relationship with the bureaucracy in order to accomplish the ends of the litigation has been difficult for OSM. However, our comparative analyses in other states also suggest that litigation -- when aimed primarily at institutional improvement -can hamper the orderly transition to community services. The mean cost per capita of the sample (N=3) of adult day programs serving Pennhurst class members was even higher at $9,644 per year. The two largest industries are apparel and food-processing. If the defendants' perception of the lawyers themselves are taken into account, then this factor plus the strategies employed tended to create the opinion among the defendants in Pennsylvania that the plaintiffs' lawyers were implacable. Although cautions against perfectly confident generalization to the population, or to facilities in other states, must be applied to the Pennhurst results, we believe that some general policy implications can be drawn. Three of the best known philosophical trends in service delivery in the 1970s and 1980s have been "normalization," the "least restrictive alternative," and "deinstitutionalization." There are also four private licensed facilities offering residential services to mentally retarded persons within the county. As the issues addressed in this "second generation" of cases became more complex, the problems of accountability and implementation also became more multifarious. Both, some of each , etc.3. For example, only 15% of families agreed (strongly or somewhat) that funding for community living arrangements was secure and permanent, and 61% disagreed. 0-29) What kind of medical coverage is most often used for this person? Interestingly, 10% of those remaining at Pennhurst State Center are still in the mild and moderate range. do you talk with, either on the phone or in person? This seems to indicate that people are often being fit into programs, rather than programs being designed specifically to meet individual needs. How does the boy feel? Together, they had a direct influence on the quality of the court protections and procedures developed pursuant to the decree. Usurpation of bureaucratic prerogatives -- Litigation places significant paperwork burdens on defendants and takes away time from other responsibilities and obligations. mildly opposed, or1. The Pennhurst Center's medical program was administered under contract to the NEEMA Medical Services Incorporated. (Ray, 1972, p. 31). Joan had significant instances of self-abusive behavior while at Pennhurst. For sheltered workshop and work activity center programs, the cost per hour of direct service worker and supervisor time at the Pennhurst Center, $19.77, was less than 70% of that of the community sheltered workshop and work activity center programs, $28.78. As with the CPE, the PQI was completed by the site reviewer after the site review, including a tour of every room. Such a finding, although it could be accurate, is certainly not in line with the general trend of current professional theories in the field. Several issues related to the use of litigation to bring about system change have arisen that seem to us to have implications for federal policy, and also in some cases for states and advocates. 1 2 9 i. Such questions would have destroyed the integrity of the study by giving information to many neighbors who otherwise might not have had it. In thinking about what your relative will need in the future, how much do you agree with this? Some of those people were discharged with little more than a supply of medications to support them, and went on to join the ranks of the homeless who may be seen on streets and warm air vents in major cities. These five counties--Montgomery, Chester, Delaware, Bucks, and Philadelphia--also comprise the Philadelphia Standard Metropolitan Statistical Area. Overwhelming satisfaction was also reported by Willer, Intagliata, & Atkinson (1979) in New York state. This factor may be a partial explanation for consent but does not necessarily explain progress once the agreement is reached. They have made more progress than similar people still at Pennhurst, and more than they themselves made while at Pennhurst. In neighboring Phoenixville, ambulance services are provided to residents at an average cost of $25 per trip. Such stability is particularly important to the well-being of such individuals given their level of vulnerability and need for lifelong supervision.

Mental Retardation, 14, 26-29. All answers to questions are completely confidential. Would it bother you a lot, some, very little, or not at all? By the time of the second interview, they had actually clarified their own opinions about what they liked and how they wanted to live. First, the analyses indicate that the community based programs now serving the people who formerly lived at Pennhurst are less costly on average than those at the institution in terms of most cost measures. _______ 1. This problem is reduced when many similar items are combined into a scale. Toronto: National Institute on Mental Retardation. Client factors that explain differences in the cost per client day among residential programs set in the community. Fourth, the cost differentials were larger when cast in terms of the cost per hour of direct care staff time than in terms of cost per person day. A significant majority had not expected such services and were quite overwhelmed by the superior quality of the facilities. Chicago: University of Illinois at Chicago, Institute for the Study of Developmental Disabilities. Our surveys in this area have been welcomed by families, they are very inexpensive to conduct, and they can help to raise red flags that would not reach official attention in any other way. No difference was found between movers and stayers in the number of years they had lived at the institution. The court ordered that special preference for early placement be given to children. Most of the area is farmland, but the eastern portion of the county has recently become a residential area reflecting the western spread of metropolitan Philadelphia past Delaware county. (p.93).

The study team obtained copies of instruments used before, analyzed all available literature, and telephoned many of the researchers who had conducted such work. This Negro is an automaton. In thinking about what your relative will need in the future, how much do you agree with this? In general, families perceived serious medical needs among their relatives in 1980, before relocation, and also after relocation. (If no, skip to Q. Later, Brockmeier (1975) reported similar levels of satisfaction, coupled with skepticism about community-based care, among families of people in Nebraska institutions. It also reflects a region that is relatively well-endowed with resources for mentally retarded persons. Overall, how satisfied are you with the services your relative is receiving now: (CHECK ONE) _______ very satisfied,_______ somewhat satisfied,_______ neutral,_______ somewhat dissatisfied, or_______ very dissatisfied? Though cautions against careless generalization are important, it is also scientifically important to stress that, in the Pennhurst deinstitutionalization, the measurable improvements in the lives of the people have been very great. We found, in 1980, that 83% of the families of people living at Pennhurst expressed satisfaction with the institution, and 72% said they were unlikely to agree with any decision to move their relatives to CLAs. ____________________________ 20. This idea is already embodied in most processes of "individual habilitation plan" development under the court order. The nature of the litigation in the four comparison states was different in that the remedies were not solely oriented to deinstitutionalization. Below is a scale from 1 to 5, where 1 means you think things will change for the worse, and 5 means you think things will change for the better if your relative is placed in the community. (DESCRIBE): _____________________________________. 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. . Also, the community programs showed a much larger range in cost per client day, $19.64 to $252.66, than did the Pennhurst programs, $99.74 to $208.94. Though the committee finds them to be the most "home like" of all facilities visited, the report concludes that there is a need for "additional planning, preparation, and safeguards," and that it is time to "take stock.". This is all by way of saying that Wyatt v. Stickney was on the crest of a wave that was to carry over well into the late 1970s, but the entailments of long-term judicial management of social reform were only dimly perceived. We infer from this demand for data that, at least in our area, the existing information systems are primitive at best. What Has Happened to the Service System? (1985). When United States District Court Judge Raymond Broderick issued his opinion in the Halderman v. Pennhurst State School and Hospital case in 1977, it was considered the most far-reaching legal event in the field of mental disabilities to date. 41.8% 30.2% 1.7% 15.8% 0.4% 9.9% 42. It is also clear that the costs of providing community living arrangement services in the Southeast Region are the highest in the state.

These figures are based on an assessment of virtually all relevant service costs including room and board, administration, medical care, specialized services (i.e., occupational therapy, speech and hearing, and behavioral services), and case management.

Pennsylvania -- Eight Year Total MR/DD Expenditures by Revenue Source: FY 1977-1984 SOURCE: Braddock, Howes, & Hemp, Expenditure Analysis Project, ISDD, U of IL at Chicago, 1984. _______ Per_______ Per Month_____________________ How much per month does this person receive in SSI or other assistance payments? Younger respondents, non-white respondents, and females had more positive attitudes.