Moreover, families who had visited a CLA opposed them just as much as those who had not. Most people feel uncomfortable when they are around physically disabled people. We hope that others will investigate the possibility that a certain amount of structure is necessary and beneficial (although that amount varies according to the level of functioning of the people served), and that below this amount, less growth will occur. Another area where the decree appears to have had some influence is with respect to IHP procedures. The 18-item short form of PASS-3 (which we will henceforth call the Normalization Instrument, because it is not actually PASS-3) and the RMS were presented and explained. At the Pennhurst Center, physicians engage in a number of prevention activities, prescribe and oversee the nurses' administration of client medications, and treat general client illnesses both on the wards and in the infirmary. _______ 1. In another analysis, we see a suggestion that settings with "too many" staff may produce less growth among the people living there -- but we need long and careful scrutiny of what might constitute "too many" before saying any more. Expected and Perceived Changes* in Family Life 134 Pre(Expected) 134 Post(Actual) * All changes were significant at the 0.001 level. 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. In August 1979 the project engaged Mr. Terry Perl, former head of the Survey Procedures Committee of ACMRDD, and Mr. William Snauffer, director of a corporation that employed experienced ACMRDD field surveyors, as consultants. (CHECK ONE) _______ None 0.7% _______ Weekly visits to make sure everything is all right 1.6% _______ Daily check-up visits to make sure everything is all right 3.4% _______ Daily visits, plus occasional minimal assistance 1.6% _______ Someone on duty at residence during waking hours providing help in normal daily activities 8.8% _______ Someone on duty 24 hours to help with daily activities 83.9% 45. At the start, the residential program sponsors must expend resources to organize, staff, equip and supply the residential facilities before arrangements can be made for clients to move in. The uncertainty surrounding future cut-backs in federal funds also may mean that many state officials will be loathe to contemplate significant system reform projects. Fourth, the community residential programs showed a greater cost advantage over programs at Pennhurst when measured in terms of the cost per hour of direct care staff time rather than in terms of the cost per client day. The core item checklist was pilot-tested at a residential school in Maryland. Attitudes about unfamiliar groups of people are generally characterized as stereotypes. In more recent years, then, that situation has changed. 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. The Pennhurst Center boasts a medical emergency response system capable of producing a physician at a client's side within three minutes. It was clear at the outset that the methodological difficulties were considerable. Orientation of the state's political leadership -- This factor has a somewhat vague relationship to the events analyzed. (IF MORE SPACE IS NEEDED, PLEASE WRITE AT THE BOTTOM OF THIS PAGE) AGE SEX MENTALLY RETARDED _______ _______ _______ Yes _______ No _______ _______ _______ Yes _______ No _______ _______ _______ Yes _______ No _______ _______ _______ Yes _______ No _______ _______ _______ Yes _______ No 55. Uses knife and fork correctly and neatly6. In a nutshell, we have found that initial family opposition changes drastically to surprised and enthusiastic support of the CLA option, tempered by continued concern about permanence. The quantitative studies conducted by Temple indicate that class members have improved in terms of growth and learning once they make the transition to the community. The real proof of the permanency of some of the court-ordered procedures lies in the settlement agreement which clearly requires the maintenance of the TIHP and IHP provisions, case management protections, and the third party monitoring of client progress and client environments. Protection of client rights -- Litigation establishes compliance oversight procedures and structures that protect the constitutional and statutory rights of class members. One of the interesting findings at that time was that many of the providers coming forward to serve Pennhurst class members were new organizations that had not traditionally provided services in the county. Consumer Interviews -- Satisfaction. THANK YOU VERY MUCH FOR YOUR INTEREST. WebVital Records. The potential effect on property values was a strong concern about new neighbors with mental illness, with severe mental retardation, and of a different race. With respect to federal funding, the litigation was only a partial stimulus to the development of small ICF/MRs in the community . The Resident Management Survey (RMS) was designed to differentiate institution-oriented from individual-oriented care practices. This change was highly significant (t = 12.94, = (114), p Changes in particular attitudes. Our work will continue in this area. We cannot be certain that the "sample" of 134 families were representative of the "population" of 630 families in every way, although we found that they were so in nearly every way we could measure. A training workshop was held in September 1979. _______ Not at all A little Pretty much A lot Do you like the people who work here? BELOW AND REPEAT FOR b.-e.). "Adaptive behavior" is a general term for this facet of independent functioning. Twenty clients were observed through this process. This pattern is illustrated in Exhibit 8-4 on the next page. The retrospective evaluation of Pennhurst from these 134 families was that it was too large and crowded a place to offer adequate care and growth opportunities for the people who lived there. (CHECK ONE) _______ No formal schooling 0.4% _______ Elementary or Grade School (Grades 1 to 8) 21.5% _______ Some High School (Grades 9 to 11) 24.0% _______ High School or equivalent 29.8% _______ Some College (1 to 3 years) 11.8% _______ College degree 3.8% _______ Some graduate school or degree 6.9% _______ Other (PLEASE SPECIFY): Technical School 1.8% 52. Attitudes of parents of mentally retarded children toward normalization activities. Changeable factors. THE STATE MENTAL RETARDATION SYSTEM There are several characteristics of Pennsylvania state government and of the mental retardation system that distinguish the Commonwealth from other states and that should be noted prior to the discussion of the litigation. The Physical Quality Instrument was found to be a more thorough measure of the pleasantness of the residential site. We strongly suggest that program administrators and providers make it a policy to solicit and support the voices of consumers. 4 3 2 1 c. Who are severely mentally retarded? Further, the decree, certainly until recently, has placed the institution in a somewhat favorable position vis-a-vis maintenance and, in some instances, enrichment of services For instance, in the first few years following Judge Broderick's original order, Pennhurst avoided the cutbacks in staff complement that were experienced by other centers in the state. PLF Beds Per 100,000 for FY 1981-84 SOURCE: Office of Mental Retardation, Department of Public Welfare, Harrisburg, PA. Adding the two kinds of service, the movers receive more total hours of service (225 hours per month) than the stayers (189 hours per month). The interview data were collected directly on the form in Appendix 5-1. The Pennhurst Implementation Team, which functioned in this fashion, proved invaluable to the success of the process. Perception of medical needs. Rotegard, L., Bruininks, R., & Hill, B. 7 3 5 0 0 4. For people with mild mental retardation, respondents reported that they would be "bothered" very little, and they expected no major impacts on property values. 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. Stands without support3. The Pennhurst Study data have been utilized extensively over the years by Pennsylvania, the counties, individual service providers, and the plaintiffs in the case. Education and Training of the Mentally Retarded, 14, 277-281. This group of respondents followed the general pattern of temporary negative reactions followed by a return to the original level. N ice8. 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. Voeltz, L.M. The attorney who filed the lawsuit in 1974 and the attorneys for the Pennsylvania Association for Retarded Citizens were powerful forces for reform. All of the programmatically oriented measures we have used are rather highly correlated with the adaptive behavior of the occupants. In the consumer interviews section of the study, the answer seems to be that the people (in our sample of verbal people) who have moved to CLAs are, in fact, better off. v.Donald Smith (1978) (See: Bradle', Allard and Epstein, 1982). : 085-R-0370EXPIRES: April, 1982 Family Impact Survey for Pennhurst Study This is a survey of families with a relative who is a Pennhurst resident. Does not prepare food at all TABLE CLEARING _______ 3. A ninth group included persons of all ages and adaptive levels but with overriding medical needs. We also found that opposition to the CLA idea was not related to the relative's level of retardation. In neighboring Phoenixville, ambulance services are provided to residents at an average cost of $25 per trip. Bradley, V.J. Must every adult with mental retardation be taken to court to be judged incompetent before a guardian can be appointed? Will engage in activities only if assigned or directed1. If the family believed that the relative had great need for attention from doctors or nurses, then that family was likely to oppose community placement. Never has toilet accidents during the day3. Interacts with others in group games3. Recognizes own family_______ b. The wide discrepancy between the Southeast and the other three regions can in part be explained by the presence of the two largest PLFs in the state -- Elwyn Institute and the Wood School. In addition to problems in the delivery of services, the Committee also appears to have been strongly influenced by the Pennhurst litigation. Don't Know9. This baseline questionnaire is included as Appendix 7-1. Still other states, like Pennsylvania, continued to contest the court's right to intervene in the state system. By mail, we could only be confident of reaching about 70%. Reduction of hostility of threatening behavior32. Nearly all of Pennsylvania's CLAs served just three people, and court cases in the state had established that settings with "three or fewer unrelated individuals" required no zoning variance in order to operate. NUMBER OF MONTHS_______9. Has the decree hastened the expansion of community living arrangements in the Southeast Region of Pennsylvania compared to other areas of the state? It certainly has, however, hastened the development of community services in the Southeast Region. Whether the program was in its initial year of operation, was the third statistically significant predictor accounting for 13.8% of the variation in community residential program per diems. Change in adaptive behavior was compared by Pearson correlations with 23 variables, including personal characteristics (sex, age, etc. Since your relative has left Pennhurst, which of the following kinds of services do you think are still needed: (CHECK ALL THAT APPLY) _______ Academic (basic reading, writing and use of numbers)_______ Behavioral (therapy, behavior modification, eliminating problem behaviors)_______ Medical (check-ups, surgery, physical therapy, dental, nursing)_______ Recreation (trips, hobbies, sports, arts, crafts)_______ Self-care (grooming, hygiene, dressing, nutrition)_______ Speech (evaluation, therapy, training)_______ Work and work-training (preparation and training for work)_______ Other? Yes In Between No Q7B: Which face is most like how you feel about living here? Achieve mastery of specific academic skill(s) -- reading, writing, arithmetic, etc. 1979, 31(4), 717-752. Protection of client rights -- Litigation establishes compliance oversight procedures and structures that protect the constitutional and statutory rights of class members. The definition of normalization has evolved since 1972 but the original formulation held sway through most of the 1970s. Finally, we would like to know approximately how much total income, before taxes, you and your spouse received in the last year. Judge David Bazelon (1972) (author of the landmark right to treatment decision, Rouse v. Cameron) made the following observation regarding the problems of implementation: I have become too sensitized to the many problems in the enforcement of such a right to remain silent. 28) 15.1% _______ Need more information 10.6% 26. Another aspect of quality assurance that we highly recommend is the inclusion of systematic surveys of families and consumers themselves. No8. Implementation of Court and Consent Decrees. Sits without support1. strongly opposed? Lawyers at this same conference were equally positive about the possibilities for reform inherent in public law litigation. All of the site reviewers agreed, however, that the procedures instituted by the Pennhurst decree improve the conditions for class members compared to non-class members. Does not have seizures CURRENT MEDICATION: How many different prescribed medications (other than vitamins or topical ointment) are administered daily? Information on program cost data, output data, and other variables in part explaining variations in program costs were obtained in structured interviews conducted by the principal investigators with a purposive sample of 82 direct care staff at the Pennhurst Center, 17 community living arrangement staff, and 20 day program staff, with the mental retardation coordinator, case management supervisor, and Core team director in each of five counties, and with dozens of Pennhurst, county and state administrative staff. Marlowe, M. (1979). After CLA opening, it was of interest to ask people whether they knew of any such programs in their neighborhoods, and if so, how long they had been in existence. In essence, most families were saying that they had recently witnessed large improvements, but they doubted that more was possible. Extent of public pressure for reform -- In Michigan, the pressure in the press and from the public facilitated consent. Procedures The overall design of the family impacts portion of the Longitudinal Study was pre-post. d. on a yearly basis? Was it: 1. under $3,0002. Mechanically counts to ten3. (1975). However, the biggest growth is in the area of professional services (over 100% increase in the last few years) and also in transportation, utilities and communications (70% to 75% increase). What is the highest grade of school you have completed? On the other hand, a truly balanced policy would have concentrated even more resources on the Western Region given its higher residential population. Summing across type of residence, the number of beds per 100,000 by region is as follows: Total Residential Beds Per 100,000 by Region Region Total Residential Beds Per 100,000 Southeast 105 Northeast 100 Central 100 Western 115 Thus, in terms of total resources, the Southeast Region is second to the Western Region. 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. Reduction of physical violence to self39. CLA Cost Per Diem by Region: 1979 through 1983 in FY 80 Dollars SOURCE: Office of Mental Retardation, Department of Public Welfare, Harrisburg, PA. With respect to cost comparisons, the cost of caring for Pennhurst class .members, based on 1981-1982 figures, is higher in Pennhurst State Center than it is in the community. The Behavior Development Survey (BDS) contained our measures of individual functioning. Stands with support2. A scale of 0 to 9, based simply on the number of correct answers, was calculated for each respondent and was used as a general index of knowledge about retardation, people with retardation, and programs/services. Approximately one per week5. About once a week or more How often did this person visit with the family at their home or on outings (in past year)? (CHECK ONE) _______ To live with persons who function at a similar level and have similar handicaps 55.7% _______ To live with persons who function at a higher level and/or have no handicaps at all 21.1% _______ To live with persons who function at a lower level with somewhat more severe handicaps 0.9% _______ To live with a mixed group of persons, some of whom have more severe handicaps and some of whom have less severe handicaps 22.0% 46. Learn to plan excursions (day trips, vacations, etc.) The first analysis was a simple Pearson correlation. Further, with the exception of Philadelphia, it indicates an area growing in population and industry. 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. There are a number of activities comprising each type of habilitative or behavioral service, some related less directly to particular clients and some related more directly. Does not respond to others in a socially acceptable manner PARTICPATES IN GROUP ACTIVITIES _______ 4. We further selected people who were living at exactly the same CLA, with the same street address, in 1983 and 1984, in order to eliminate people who had changed environments, even if they only moved to an apartment across the hall. Of the cases brought recently, more are going to trial, and consent agreements are more aggressively negotiated by the defendants. These attitudes change when the existing attitude is insufficient for dealing with situations, whether because of new information or because of a new environment of some kind. Summing across type of residence, the number of beds per 100,000 by region is as follows: Total Residential Beds Per 100,000 by Region Region Total Residential Beds Per 100,000 Southeast 105 Northeast 100 Central 100 Western 115 Thus, in terms of total resources, the Southeast Region is second to the Western Region. Later, in CLAs, 22 people, or 73% of the sample, reliably expressed satisfaction, and no one was consistently dissatisfied. Hence we conclude that, on an overall index of amount of service, the movers are better off. By mail, we could only be confident of reaching about 70%. Establishing a working relationship with the defendants was difficult for OSM. 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