Figures for the other two regions also make some intuitive sense because of their resource levels and growth patterns.
Though growth has levelled off recently, the program now encompasses 1256 such facilities.
Price includes postage and handling. Include any change of address. fairly sure, or1. The simple correlations in Exhibit 6-3 indicated that some of what the environmental variables were measuring was the functional level of the people living in the environments. This documented progress would tend to support the contention that providers have not been overwhelmed but, to the contrary, have successfully met the needs of those persons that have been placed. (Enter 99 if not applicable. Third, mental retardation program officials cannot carry out the complex transition from institutional services to community-based care without a variety of financial supports within the state (e.g., from state Medicaid officials, income maintenance personnel, and vocational rehabilitation officials) and at the federal level. The Pennhurst case management teams were established in each county as part of the court-order to place residents from the Pennhurst Center in the community. We also wanted to find out whether any such changes were short term or long term. Budoff et al. No8. Providers were concerned that there would not be enough funding to cover the multiple needs of former Pennhurst class members. Severe mental illness is always permanent. About once a week or more How often did this person visit with the family at their home or on outings (in past year)? Judicial strategies employed by the federal judge in contested and uncontested cases -- This factor requires more exploration. In fact, that is the direction this research team would recommend for the future. Yes -- go back2. Because of its wide use, prior findings, and the theoretical importance of the RMS in comparing institutions to community settings, it was included. In Pennsylvania, the American Federation of State, County and Municipal Employees (AFSCME) is a significant actor in the political arena in the state. Many explanations for the phenomenon are possible, including the idea that the first interview may have been the first time the people were asked for their opinions in a formal way by a stranger, and that, with even a little practice, they became more able to respond in such a situation. As long as resources were relatively flexible, there was enough "play" in the system to accommodate comprehensive consent agreements. 1 2 3 4 5 23. These attitudes are not eradicated even today. Checks must be drawn on a United States bank. Also, responses showed sharply different levels of "bother" for mild versus severe mental retardation. In one state, where the institution was ultimately closed, the union did not oppose the phase out since conditions at the facility and abuse among the staff had been highlighted in the media. Drinks from cup or glass -- considerable spilling1. Officials in a number of states report that they are effectively prohibited from establishing community programs at a higher per them rate than that of the state institutions as they are still being held to their earlier claims that "community programs are less expensive than institutional programs." This figure should not include any portion of the persons SSI or other public assistance money. The labels for the 5 groups in the figure have these meanings: PHYS = People with Physical DisabilitiesMMR = People with Mild Mental RetardationRACE = People of a different Race than the respondentSMR = People with Severe Mental RetardationMI People with Mental Illness In answer to either question (would you be bothered or would property values be affected), respondents could say: [1 = Not at all][2 = A little][3 = Some][4 = A lot] These responses were treated as 4 point scales.
The qualitative analyses further indicate that inter- and intra-agency planning at the state level is crucial to the success of any comprehensive deinstitutionalization activity. 1 2 3 4 5 (READ ALTERNATIVES) 21. In answer to the question, "Overall, how satisfied are you with the services your relative has received from Pennhurst?" The data show that Pennsylvania's community residential model has overwhelming advantages, but the data also lead to the inference that day programs are not very different from decades-old workshop and adult day care models in other parts of the state and the nation. The total land area is 760 square miles, making it the largest of the five counties in the Southeast Region. Additional criticism and feedback was obtained from several psychologists, and a certified advocate from the Office of the Special Master for Pennhurst, and necessary modifications were made. Moreover, during the course of the work, we came to suspect serious reliability problems with many of the environmental instruments we used. IVE ENJOYED TALKING TO YOU.
Social Interaction Training -- e.g., interpersonal skills, manners A ______________ _______ B. Dressing Skills Development -- Teaching, not just helping B ______________ _______ C. Eating Skills Development -- including food preparation C ______________ _______ D. Hygiene and Grooming Skills Development -- including toileting D ______________ _______ E. Family Life and Sex Education E ______________ _______ F. Community Living Skills Training -- e.g., money handling, domestic activity, obtaining generic community services, shopping F ______________ _______ G. Recreation Therapy -- Provided or supervised by a recreational therapist G ______________ _______ H. Supervision/Training in Group or Individual Recreational Activities -- (sports, hobbies, use of TV, etc.) As a result, the court-appointed officers in the four states had responsibilities that were much more removed from the day-to-day operations of the system and the resources at their disposal were also more limited. Reads simple stories or comics3. One of the strongest predictors of a family's opposition to community placement was the family's perception of the intensity of the relative's need for medical care. Certainly, the four years had been eventful ones in the history of Pennhurst. It has a population density of 260 persons per square mile and a per capita income of $7,000. That question has been approached in several ways, because well-being has many facets. The questions were: Baseline: If your relative were to be selected for movement from Pennhurst to the community, how likely would you be to agree with this decision? Can do none of the above USE OF TABLE UTENSILS _______ 7. 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. In addition, state medical assistance officials were concerned about the impact of a community ICF/MR initiative on the overall Medicaid budget even though the infusion of federal funds would conceivably offset state mental retardation funds for community living arrangements. There is some support among our findings for this line of reasoning. Because the 134 families initially were not different from the average Pennhurst family, we believe that the findings about attitude changes contained here are generalizable to the entire set of Pennhurst families. As noted by Triandis (1971) and others, the strength of the stereotype is inversely related to knowledge about the group. The consumer interviews part of the study, then, addressed two objectives. 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. (1975). Some anecdotal information and material presented to the Hearing Master suggests, however, that some problems have arisen in out-of-region placements -- particularly with respect to medical care and entanglements with the mental health system. That is not a desirable property for any set of environmental scales or standards. Even with the court scrutiny in Pennhurst, case management is a fragile function. They include the following: The general human services system in the state is directed by an umbrella agency, the Department of Public Welfare (DPW), which has responsibility for social services, juvenile justice, child welfare AFDC, Medicaid, mental health, and mental retardation. A quantitative overview of Pennhurst Center: 1978 to 1983 (Pennhurst Study Brief Report #16). Grooming and other hygiene (toothbrushing, hair care, shaving, cosmetics, etc.)07. Are there any other comments or observations that you may have? Lakin, C. (1978). In deinstitutionalization cases, however, these feelings and perceptions become a major key to parental acceptance. more expensive than the cost of care at Pennhurst State Center? Further, the state placed a limit on the number of small ICF/MR beds at 500. The Characteristics of the Physical Environment was replaced by the Physical Quality Instrument (PQI) (taken from a modification of the MEAP Rating Scale created by Seltzer, 1982, and further modified by our group). The medical model versus development model of care -- Simply put, the medical model tends to view the relationship between staff and residents in terms of doctor and patient and emphasizes diagnoses and prognoses, and treatment services. (1978). Just over 50% were nonverbal, 47% were less than fully toilet trained, and 40% were reported to display physical violence toward others. In the Pennhurst situation, family veto power would have precluded community placement for 72% of the people at Pennhurst, and would thereby have prevented the vast improvements in well-being that we have measured. Over the next two years, Joan's self-abusive behaviors increased steadily, especially face-slapping to the area around her eyes. _______ Current Medication Name Dosage Times Per Day Is there a record (log) maintained at residence of all medications and their administration for this person? Dont know THANK YOU VERY MUCH FOR YOUR PARTICIPATION. Comparison of residential program costs per hour of direct service worker and supervisor time at the Pennhurst Center and in the community. (1983). This concern was much less intense about people with mild mental retardation. In the 77-78, 88,000 students were enrolled. Using such models, policy makers will be able to more systematically explore the long term impact of funding decisions on system costs and client outcomes addressing such questions as: What is the projected growth of the developmentally disabled population and what are the cost and budget implications of this growth? Questions about the ability of the system to absorb "more difficult" clients have been asked throughout the study period. 19.6% 3.1% 5.8% 9.7% 5.6% 56.2% b.
The loss of key personnel and the lowering of employee morale were noted as two key factors. Don't Know9. As a concrete example of the magnitude of these differences between expectations and actual experiences, we present the pre and post data for the Relative's General Happiness in greater detail in Exhibit 7-6. Item selection was based on Cronbach's Alpha, a measure of one kind of reliability called internal consistency. No9. 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. Thirty of the original 56 people have now moved and have been reinterviewed in their new community homes. Is your relative still living in that setting? The creation of the Office of the Special Master in Pennsylvania, as noted in the first implementation analysis, caused a great deal of consternation both because of the extent of its responsibilities and the amount of resources devoted to its operations. About once a month1. Literature (described below) had already established firmly that most families of people living in institutions were opposed to community placement. IN SUCH CASES, PLEASE GIVE US YOUR BEST ESTIMATE AND THEN WE WILL GO ON TO THE NEXT QUESTION. Since the creation of the Office of the Special Master in 1978, the state and county defendants have complained that the court has created a shadow bureaucracy and has invaded policy areas previously reserved to the state. 3.3 4.3 0.021 (0.026) Q13B you feel about yourself? We expected, on the basis of prior literature, that the people with the most functional skills (especially verbal) would probably be among the first to move to CLAs.
Such a policy should apply across agencies and departments and should influence system design issues in income maintenance, housing construction and rent subsidy, medical services, long-term care, and social services. No Answer 21. In making its recommendation, the Committee notes that "the legal base upon which the State's MR system is built may no longer be adequate." The 134 were five years younger on the average, and were admitted to Pennhurst about five years later than the average. In the two comparison states, state lawyers were more influenced by the agenda of state mental retardation program officials than was the case in Pennsylvania. According to Arndt (1981), the best way to treat these data is as two simple sum scores, one reflecting adaptive behavior and the other maladaptive behavior.
It is also the fourth largest city in terms of population with a total of 1,800,000 residents. Has no understanding of numbers TIME (Check AL L statements that apply) _______ a. Since Pennhurst class members do not have the option of remaining at the institution indefinitely, operationalizing this federal requirement has been difficult for the state. In: J. Rubin (ed. $5,000 - $9,9994. Another concern related to the impact of litigation is whether others are deprived of resources that they would otherwise have enjoyed. What is your name? CHAPTER 8: NEIGHBOR ATTITUDES Introduction When a group home or community living arrangement (CLA) for people with mental retardation opens in a neighborhood, how do neighbors react? In light of the increase the families had seen in their relatives' developmental abilities -- especially as reported in the open-ended comments -- this finding was difficult to interpret. Instruments Two questionnaires-- one for the baseline survey and one for the post-relocation survey -- were developed for the family impacts study. The results are presented as the bar graph of Exhibit 8-6 on the next page. I thought you might like to see a cemetery for Pennhurst State School and Hospital Cemetery I found on Findagrave.com. Over the next two years, Joan's self-abusive behaviors increased steadily, especially face-slapping to the area around her eyes. Just over 50% were nonverbal, 47% were less than fully toilet trained, and 40% were reported to display physical violence toward others. Funding issues dominated general system developments during this time period. 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. However, most of those interviewed were clear that without the presence of the litigation as a political shield against union, parental and legislative opposition, it would have been extremely difficult to carry out such a policy. The income ranges are wide, however, and encompass some very wealthy households. A total of 134 this "before and after" fashion. 61.7% 14.8% 15.7% 5.1% 2.7% 17. This simple pre-post consumer interviews design had not been implemented previously in any study of deinstitutionalization known to us. It should be noted that under the Title XIX (Medicaid) program the fees allowed the physicians for these services are generally lower than actual costs with the difference between actual costs and allowable Medicaid charges made up by other private payers. To operate programs of four to 15 beds, however, many providers for the first time were forced to ask for zoning variances. Orders soft drinks at soda fountain or canteen1. Improving the social status of mainstreamed retarded children.
4 3 2 1 d. Who are mentally ill? As a result of Susan's ambulation problems, the provider felt it would be better for Susan to live in a ranch-style home. We found that only 28% of neighbors were aware that a group home had moved in at all.
The major state statute governing the states mental retardation program is the Mental Health and Mental Retardation Act of 1966. An examination of the beliefs and attitudes which did not change is also revealing. Delaware County, in contrast, is one of six counties administered by home rule, and Philadelphia has a combination city/county governmental structure. In general, families perceived serious medical needs among their relatives in 1980, before relocation, and also after relocation. The 134 families in this study were very satisfied with Pennhurst, but are now just as satisfied with the CLAs. In 1975, the per capita income was lower than most of the other counties in the region. In Pennsylvania, the case spanned two administrations, and neither settled the case. In this way, we achieved samples in each neighborhood that were close approximations to simple random samples (i.e., every person within the neighborhood had about the same chance of being interviewed). nom., Wyatt v. Aderhold, 503 F.2d. They were 87% white and 54% female, and 80% had a high school education or more. Will pay attention to purposeful activities for at least ten minutes2. Never4. Your mentally retarded relatives relationship with other people 42.4% 6.4% 31.1% 2.7% 9.8% 7.6% k. Your mentally retarded relatives general happiness 48.8% 8.9% 22.5% 2.4% 11.5% 5.7% l. Your mentally retarded relatives relationship with you 22.2% 6.4% 51.3% 1.2% 10.3% 8.6% m. Your mentally retarded relatives relationship with your spouse 17.4% 2.8% 36.3% 0.5% 4.8% 38.3% n. Your mentally retarded relatives relationship with (his/her) brothers and sisters 19.5% 3.4% 47.1% 1.7% 8.3% 20.0% Please indicate how strongly you agree or disagree with the following statements. Evidently, families did not accept the idea that everyone, even persons with severe or profound mental retardation, can grow and develop (e.g., Gold, 1973). Learn how people are expected to relate to employers and co-workers.
For the people who have moved from Pennhurst to small community residences, results are not mixed. We leave that balance to the political process and stand with our inference that ease of access and reimbursement rates should be made at least equal. 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. Reduction of physical violence to self39.
The full modified BDS was designed to be a comprehensive tool for monitoring the status, needs, services, and outcomes of individuals in the mental retardation service system. Finding and Discussion Residential Programs Comparison of residential program costs per client day at the Pennhurst Center and in the community. EXHIBIT 11-1.
2 pointsPerceives the set of pictures as representing a single person (perceives sequence) and correctly labels emotions. The evidence on medical services suggest that people in CLAs are, for the most part, using the Medicaid and Medicare services systems effectively, and we have observed few cases of people lacking regular checkups or other needed services. The initial theory was that since the institution was to be closed in a relatively short period of time, the development of more elaborate improvements would not be necessary. In between, sort of, a little, etc.3. In fact during this time it actually enriched its services particularly with respect to medical care. In our case, the 1983 adaptive behavior scores were significantly correlated with the gain scores (r=-.24, (318), pWe also know that many environmental measures are correlated with the level of functioning of the people living in the environments; for example, the Group Home Management Schedule measures the degree to which the environment fosters expression of individual choices, as opposed to having blanket rules and regimentation for all. 
Moreover, the Justice Department appears in general to be more reluctant to join in actions against public agencies or conditions that may threaten the civil rights of people with handicaps. Each dollar that we spend for one person is an hour or dollar subtracted from another" (Rosenberg and Friedman, 1979, p. 822). Alone, the mean adaptive behavior scores of residents accounted for 13% of the variation in cost per client day, and medical need accounted for 3.0% of the variation. Joan's move to the community in the summer of 1980 was fairly uneventful. In Between3. In the community, emergency teams are more fully utilized (i.e., operate near capacity) given the much greater number of emergencies occurring in the larger Phoenixville community.
What is the medication(s) and its dosage? III.
The cost differential can be traced almost entirely to differences in salaries and fringe benefits between the state employees at Pennhurst and the private employees in the community programs. Minimally supervised apartments were the least costly type of arrangement on average at $54.64 per day. This post-questionnaire was simply a subset of the items on the baseline questionnaire.
Schroeder, S.R., & Henes, C. (1978). This assured us that the physical environment, at least, was relatively constant. The three new instruments added approximately 1/2 hour to the review. Retail and wholesale trade employs about a quarter of the workforce. Because data on funding by region was not available before 1980-1981, it was difficult to determine whether funding for the Pennhurst decree came at the expense of programs in other parts of the state. Restrictions in the state's mental health and mental retardation statute that limited the development of community residences to three person homes; A lack of cooperation and participation in resource development from other state funding agencies such as the Bureau of Vocational Rehabilitation and the housing finance agency; The absence of any regional planning or funding mechanism in the state mental retardation system capable of consolidating and funding highly specialized and expensive services for more disabled individuals; No comprehensive plan for the use of ICF/MR (Title XIX) funds in the community which would free up state funds for the expansion of community-based living arrangements; Limited development of back-up resources for the support of severely mentally retarded persons living in the community; Turn-over in staff in the community living arrangement (CLA) program at an average rate of once every six-months -- a phenomenon that adds costs and creates instability in the minds of some observers; No mechanism in the state to ensure an orderly transfer of state employees from institutional to community-based settings; Provided an assessment of state activities directed at deinstitutionalization generally and in response to the decree in. _______ Yes_______ No_______ Dont know (IF NO, GO TO QUESTION 6.
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