It is the oldest and most widely used instrument for that purpose. Next were isolated those costs traceable directly to the residential day, and other client programs using the reports of expenditure by activity. 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. After two mailings and extensive telephone follow-up, responses were received from 472 families (75%). Some providers, however, are beginning to show the strain of rapid expansion and long-term stability is a concern in some instances. In some areas, however, the differences were from negative expectations to post-relocation reports of distinctly positive observations. In many ways, the richness of the study can be attributed almost entirely to the presence of the court decree -- not just because the decree required the state to move mentally retarded people out of Pennhurst State Center into the community but because the litigation placed a spotlight on the system and speeded up the process of change. We therefore call for far greater attention to the interrater reliability of the existing standards, licensing, and environmental quality measures. Leave blank if person self-advocates. Because our cost analyses showed that community-based care was less expensive than Pennhurst, but that nearly all of the difference was caused by lower wages and benefits for community program employees, we recommend that administrators and advocates at all levels avoid the claim that tax dollars can be "saved" by switching to community-based services. In Between3. We decided to add three other environmental quality instruments before we began the community phase of data collection: the Life Safety Codes Instrument, Characteristics of the Treatment Environment (CTE), and Characteristics of the Physical Environment (CPE). Conroy, J.W., Feinstein, C.S., Lemanowicz, J.A., & Kopatsis, M. In press. Try again. People living in community based programs can utilize the same generic services (e.g., religious, library, fire safety) offered to every other citizen, and the cost is spread over a much larger number of people. Permanence seemed to be a central issue for families, and they were clearly not confident of the permanence and security offered by the new CLA concept. The sources of broader policies that affected the system were the Governor, the Department of Public Welfare and the legislature. One of the factors in Pennsylvania and in the four comparison states that appears to have a positive influence on the attitudes of parents toward broad scale litigation is the presence of an escape valve in the decree -- either the ability to return a class member to an institution when necessary or the ability of parents to influence the nature and timing of placement. Such models, built around prescriptive as opposed to normative program designs and costs, if nothing else, would upgrade the economic arguments for and against programs from an actuarial, value-less basis to a criterion, value-centered basis--that is from economic arguments blindly accepting of existing programs and practice and the costs thereof, to economic arguments predicated on the costs of programs shown to be of benefit to clients or at least to meet generally accepted standards of practice. These relationships may not lead to the same conclusions as multivariate techniques, and moreover the methods used here assume that the variables are all related in simple linear fashion. This is contradictory to one of the implicit aims of small, more individually tailored residential and day programs. Treatment resources, although expanding, are occasionally scarce and generally expensive in any economic sense. This point is borne out in the following assertion by David Ferleger (1979), lawyer for the original plaintiffs in the Pennhurst case: Judicial outrage at the abysmal life of people in particular institutions has caused courts to mandate reform under whatever theory was expeditious in the circumstances. Limited enforcement powers. Change for the Worse No Change Change for the Better Not Applicable 1 2 3 4 5 0 a. We are not aware of any national level or state level monitoring, licensing, standards, or program audit instruments for which adequate reliability data have been made available. Uses names of familiar objects2. . Mixes and cooks simple food, e.g., fries eggs, makes pancakes, cooks TV dinners, etc.2. 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. Regional HCFA staff stated that the proposal lacked detail and cited numerous issues that had to be resolved. In order to rectify the budgeting problems, OMR staff prepared both short term and long term solutions: first, they covered the existing deficits through a modification of the 1980-81 allocation; and second, they developed special procedures for monitoring and controlling the use of expansion funds for Pennhurst class members. The most direct questions about the idea of community placement were measured on 5-point agreement scales. Funding.
Public awareness about mental retardation. Reads simple stories or comics3. Examination of existing measures and standards should begin immediately, and a national level attempt to develop independent measures should be a high priority. One concern involved our Normalization Scale, because preliminary analyses showed that the Normalization Score of a given CLA could change a large amount from one year to the next. Some providers, however, are beginning to show the strain of rapid expansion and long-term stability is a concern in some instances. These studies, as well as the Pennhurst cost study, show that the employees of state institutions generally command higher salaries and more ample fringe benefits than do their counterparts in community-based programs. Deducted were those costs for goods and services of no perceptible benefit to clients such as research and development expenses, an litigation fees. In addition, the community-based work activity centers/sheltered workshop programs were able to provide 532 (n-21) direct staff hours per client versus 340 at the Pennhurst work activity center/sheltered workshop program. Specifically, the objectives of this overview are as follows: To shed light on the influence that the Pennhurst litigation has had on the mental retardation system in the state; To identify both positive and negative consequences that the litigation may have had on clients, county programs, and the conduct of state services generally; To assess the extent to which the aims of the litigation coincide with the aims of the state's mental retardation policy makers; To speculate on the possible ways that the Iitigation may have altered the flow of resources to mental retardation programs in the state; To determine the extent to which the aims of the litigation in Pennhurst have been achieved and to contrast these findings with those in other states; To reflect on the policy implications of the findings in Pennsylvania against the back drop of implementation in other parts of the country.
By the mid-seventies, for instance, compliance with the Willowbrook decree had already cost upwards of $20 million at the state institution alone. (As an example, suppose it is found that there is no correlation between the number of firefighters and the speed of putting a fire out. _______ 1. The types of programs costed include residential, adult day (i.e., sheltered workshops, work activity centers, pre-vocational and adult day care), case management services, and specialized support services (specifically behavioral therapy, speech and hearing, and occupational therapy). On the county level, however, elected local commissioners in many areas of the state have been predominately Republican. In fact, there was a certain amount of pride among many of the key informants regarding the accomplishments of the community system and its ability to cope with the needs of persons with severe and profound disabilities. Industry in the county is relatively diverse. Lack of an overall plan. Finally, project staff reviewed the quantitative studies conducted by Temple University on client progress, residential environments, and parental attitudes. 19) _______ 1. Has the concentration of resources on Pennhurst class members come at the expense of funding for programs in other areas of the state where resources have not expanded at the same rate? Characteristics of the treatment environment: A factor-analytic study. In the case of Pennhurst, despite the fact that the lawsuit clearly polarized groups who might otherwise have been allies, it seems to us that the results over 600 people moved to vastly enhanced living conditions in six years would not have been achieved by any other method. 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. If the aim of the community system is to provide a stable living environment for mentally retarded persons with a range of disabilities, then community staff should be paid at a level that will ensure the recruitment and retention of qualified personnel. The population, which has declined slightly in the last decade, is entirely urban, with about 14,000 persons per square mile. Regression analyses were used to explain the relative power of variables such as those cited above to explain unit cost differences among programs within Pennhurst and within the community. Some difficulty in hearing2. Instead, some staff increasingly regard their jobs as a set of tasks unrelated to the larger aims of normalization and habilitation.
We must therefore recommend to state legislators, state officials, and local program providers that total control of the lives of adults under public care should not be ceded to parents or other family members. 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. No Answer 19. over $25,000?8. Case Management Programs In the community, the case management functions for develop-mentally disabled clients in the Southeast Region are shared by the court-mandated Pennhurst case management team, and the regular case management system, located either in the county office or in base service units (usually part of community mental health centers). Even within a particular state, the official position can shift in response to changes in the level of resources, the force of public opinion, a turnover in political leadership, and pressures of competing constituencies. The average cost per hour of selected developmental/nursing service in the community residential programs was 42-93% of that in the Pennhurst residential programs, depending on the average adaptive skill levels of the program clients.
(CHECK UP TO THREE) _______ Academic (basic reading, writing and use of numbers) 6.8% _______ Behavioral (therapy, behavior modification, eliminating program behaviors) 48.3% _______ Medical (check-ups, surgery, physical therapy, dental, nursing) 72.0% _______ Recreation (trips, hobbies, sports, arts, crafts) 30.9% _______ Self-care (grooming, hygiene, dressing, nutrition) 65.7% _______ Speech (evaluation, therapy, training) 30.5% _______ Work and work-training (preparation and training for work) 15.6% _______ Other ( DESCRIBE ): _________________________ 8.3% 43. The programs were classified into two groups according to the mean age of their clients: (1) adults age 22 and over, and (2) children age 21 and under. 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. Rotegard, L., Bruininks, R., & Hill, B. Community residential program staff even go so far as to implement physical, occupational, speech, and behavioral therapies designed by consultants at low cost. New York: Praeger Special Studies. Atthowe & Vitello (1982) detected similar feelings among families in New Jersey. All answers to questions are completely confidential. In terms of government, Delaware County differs from the other four counties in the region in that it is a Home Rule County comprised of an elected county executive and five councilpersons. Relatively 'mild' effects were projected for people with physical disabilities and for people with mild mental retardation. Per Diems in State Centers for the Mentally Retarded: 1977-1978 and 1973-1984 SOURCE: Office of Mental Retardation, Department of Public Welfare, Harrisburg, PA. EXHIBIT 10-10B. This group should not be considered representative of all class members since the respondents had to be capable of some form of responsive expression. ), 01. The question is whether settled cases, if they were brought now, would result in consent agreements. What kind of place would you like to go to ? The activity involves the review of transitional habilitation plans (TIHPs) and individual habilitation plans (IHPs), individual client monitoring at scheduled intervals and in response to complaints, the collection of level of functioning information, and the assessment of the living environment (the latter two activities are carried out by the Temple Developmental Disabilities Center under contract with the Commonwealth). Among the public objections were the contention that the standards should not be considered as a scale, that the institutional cottage sampling was inadequate, that the specific items selected and the way they were selected were questionable, and that one of our methods of statistical analysis was misleading. In the first wave, conducted in early 1981, the 22 families of people who had been in CLAs for six months or more were interviewed. Delaware County has 15 school districts and county public school systems. This study revealed no strong preference as to the best question formats to use with people with mental retardation. 41.8% 30.2% 1.7% 15.8% 0.4% 9.9% 42. _______ Yes, TIHP as required by Pennhurst court order Yes, IHP as required by Pennhurst court order Yes, LMP, IPP, APR, or similar written program plan No Is there a copy of the written program plan at the persons residence? This contrasts sharply with the estimated cost of $2,322 per resident for physician services (not counting laboratory services) at the Pennhurst Center. Happy2. _______ (age) MEDIAN = 11.5 years 6. Not applicable, no plan MONTH_______ /YEAR_______ What is the approval date on the written plan (for Pennhurst class members, use REVIEW DATE of IHP or TIHP)? The remedy crafted by the federal district court judge made it possible to show that better lives for mentally retarded persons could be secured in the community. ), and the fact that the Southeast Region has the lowest number of CLA beds per 100,000, the magnitude of the waiting list in the Southeast Region by comparison to the rest of the state has likely been influenced by the litigation. If the environmental measures are correlated with initial adaptive behavior, and initial adaptive behavior is negatively correlated with gain scores, then possible relationships between the environmental variables and gain may be masked if we rely solely on simple Pearson correlations. Most happy54321Least Happy 10) Which one is most how you feel about the workshop? Both the quantitative and qualitative results of the Pennhurst Longitudinal Study provide guidance to future policy making at the federal as well as state and local levels, and also should be useful to local private service providers, the courts, advocacy groups, and others concerned with the development and improvement of programs for developmentally disabled persons. Conroy, J. Mental Retardation,19, 53-58. The county tabulation shows, in addition, that there were significant variations among Normalization scores received by CLA programs in different counties; however there was practically no variation among RMS scores in CLAs in different counties. Cloak of competence. Clears table of breakable dishes and glassware2. Voeltz, L.M. For each additional resident, the program cost per client day could be expected to decrease by $3.36 A program in its first year of operation could be expected to cost an average of $8.73 more per day than programs in existence for more than one year. We can't rationally ask or expect people to hang on here and pass up new employment opportunities elsewhere but we are going to do what we can (and whatever is needed), by hook or by crook, to insure that no client suffers. & Beyer, F. (1979). . The largest industries are transportation equipment, non-electrical machinery, and petroleum refining. Exhibit 10-7 provides a slightly different slant on the question by showing the growth in the absolute number of CLAs in each region over the six year time period. Three of the best known philosophical trends in service delivery in the 1970s and 1980s have been "normalization," the "least restrictive alternative," and "deinstitutionalization."
help from professionals, then the lawyers are going to have to do something that they are not equipped to do. An attitude that appeared to be related to feelings about community placement was that 75% of families believed, strongly or somewhat strongly, that their relatives had no potential for further educational or psychological development. Retail and wholesale trade employs about a quarter of the workforce. 3.9 3.9 1.00 (1.00) Q11B you feel about the staff? Then the cost of the indirect activities were allocated among these residential, day, and other client programs in proportion to the direct costs of the programs in order to arrive at "loaded" costs for these programs. The situation in the four comparison states, however, was very different. At the trial, evidence indicated that the average person at Pennhurst had lost skills during his/her time there. EXHIBIT 8-1. I believe that my family has not had to assume added financial burdens for the care of our relative since (he/she) has left Pennhurst. At the end of the Longitudinal Study, then, we had spoken with 134 families of people who had moved to CLAs. Mean2. Briefly, the study population had the following characteristics: Impact on Costs (Human Services Research Institute). However, when general and client-specific program planning and coordinative activities are excluded as well, two of the three community Core teams become less costly per hour than the Pennhurst Professional Services. Questionnaires were mailed to each of these 630 families for the Baseline Survey. Arndt, S. (1981). Never observed3.
It may be time to end our seeming preoccupation with the analysis of existing program costs at least in so far as they are being used in a normative sense to inform program planning and budgeting decisions. Education and Training of the Mentally Retarded, April, 97-103. The Physical Quality Instrument was found to be a more thorough measure of the pleasantness of the residential site. Is not toilet trained at all, SELF-CARE AT TOILET (check ALL statements that apply), _______ a. Have you ever lived anywhere else? 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. In addition, an exploration of the factors related to attitudes, and of factors related to changes in attitudes over time, was planned. Understands instructions referring to the order in which things must be done, e.g., first do. Charges for the services of these physicians are generally reimbursed under Medicaid. The following graph shows the increase in adaptive behavior for 176 people who were living at Pennhurst in 1978 and 1980, and then in CLAs in 1983 and 1984. We have different hours of getting up and going to sleep here. Reduction of community consensus-- The forced choices precipitated by litigation (e.g., to close institutions, to expand the number of small community living arrangements, etc.) The attorney who filed the lawsuit in 1974 and the attorneys for the Pennsylvania Association for Retarded Citizens were powerful forces for reform. Competitive Employment EDUCATION 20. The final data set, on which most of the results presented here are based, consisted of the remaining 218 respondents from whom all three interviews were obtained. 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). With the right planning and dedication, anyone can have a successful garden this summer. In between, some of the time3. Gilhool, T. A Commentary on the Pennsylvania Right to Education Suit. It was evident during this most recent phase that the five county defendants had a sense of urgency in meeting the June 30 1982 deadline for community placements. What is the highest grade of school you have completed? The individuated nature of the remedy in Pennhurst is a significant factor in diverting the attention of the Special Master from the broader structural aspects of the decree. Sexual interaction57. What Has Happened at Pennhurst? The average cost per client day at the infirmary in Fiscal Year 1981-82 was $187. Extent of public pressure for reform -- In Michigan, the pressure in the press and from the public facilitated consent. The answer in almost all instances was a resounding yes. The mental health and mental retardation program at the county level is managed by a county administrator appointed by the county commissioners. Developments at Pennhurst State Center continued to focus on medical services including the medication reviews conducted by an outside medical consultant. The results are presented as the bar graph of Exhibit 8-6 on the next page.
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. Recognizes no words or signs COMPLEX INSTRUCTIONS (Check ALL statements that apply) _______ a. Meeting the deadline was important in order to ensure retroactive payments for the period prior to the end of the fiscal year. This change was highly significant (t = 12.94, = (114), p Changes in particular attitudes. 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. This is more home; there is no big crowd, just a few people." Great difficulty in seeing1. Yes2. Your own social life b. 75-80-SD (D. Maine, July 14, 1978). Changes on Smile Face Scale Items Among Stayers, 1980-1984 Which fact is most like how Mean Score Before Mean Score After Significance of t (T) Q7B you feel about living here? The measurement that we chose was waiting lists for CLAs in 1977-1978 and 1983-1984. In thinking about what your relative will need in the future, how much do you agree with this? While Steve reported having been very happy at Pennhurst, he is even happier in his new group home. ____________________________ 20. 4 3 2 1 e. Of a different race from your own? Has the litigation influenced the state's utilization of alternative funding sources, most specifically Title XIX? 8.6% 10.7% 9.3% 15.0% 56.5% 25. The 10% to 20% figure implies that only a small proportion of citizens would be opposed to a CLA -- unless something is done to raise opposition to the CLA, especially before the CLA opens. Third, this study echoes the findings of comparative cost studies of community and institutional-based programs in other areas of the country. I believe that my relative has reached (his/her) highest level of educational and psychological development and will not progress much beyond the level (he/she) is at now. Makes change correctly but does not use banking facilities OR uses banking facilities but does not make change correctly3. Other lawsuits are pending right now. New York: John Wiley & Sons. While many families of people in institutions see group homes or community living arrangements (CLAs) as a viable way to care for some people, most prefer the institution for their own relatives (Atthowe & Vitello, 1982; Frohboese & Sales, 1980; Payne, 1976). Apartment programs and small home programs showed the highest average cost per client day at $74.84 and $121.93 respectively. 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. 
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