Klaber, M.M. In order to validate this speculation, county personnel in the Southeast Region were recontacted and asked whether they could explain the volume of the waiting lists in their region compared to the other regions in the state. 26-309. Specifically, service agencies will inevitably become more bureaucratic and small providers may have difficulty in making the transition to a more complex system. Two proposed per them ceilings for ICF/MRs were issued in June 1982. We had no data at the beginning of the study to even test the clustering idea. (RECORD AS MANY AS APPLY) # of Relatives a. on a daily basis? The estimated cost per capita of work activity centers and adult day care programs in the United States was an estimated $3,928 in Fiscal Year 1980-81. The pilot test provided feedback which led to improvements in the questionnaire. Misplaced accountability -- Broad-based litigation does not always single out those public officials whose commitment to compliance is most crucial to success. 1 2 9 7. Attempts to soap and wash self2. When your relative became toilet trained. mildly opposed, or1. Public school, special class in regular school22. On the other hand, a truly balanced policy would have concentrated even more resources on the Western Region given its higher residential population. Relative prices of resources. Some difficulty in seeing2. 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? It was well-structured and internally consistent (Cronbach's Alpha = .94). American Journal of Mental Deficiency, 85, 554-556. Reduction of hyperactivity45. There are several ways of approaching this question. Uses money but does not make change correctly1. Medical program administration. Michigan's level of funding was lower than what was available in Pennsylvania and the economic picture was more precarious. _______ #10 _______ #6 __________________ #1 _______ #11 _______ #7 __________________ #2 PQ _______ #8 __________________ #3 _______ #1 _______ #9 __________________ #4 _______ #2 _______ #10 __________________ #5 _______ #3 _______ #11 __________________ #6 _______________________________________ #4 _______________________________________ #5 _______________________________________ #6 ______________________________ #7 _______________________________________ #8 APPENDIX 5-1: CONSUMER INTERVIEWS QUESTIONNAIRE1 INSTITUTE FOR SUREVEY RESEARCHTEMPLE UNIVERSITY--Of The Commonwealth System Of Higher Education--1601 NORTH BROAD STREETPHILADELPHIA, PENNSYLVANIA 19122 STUDY #540-350-01OMB No. About once a week or more How often did family members visit the person (in past year)? Certainly, in this case, Susan is getting mixed messages from her family and from staff and others around her. Asylums. In addition, the interview included nine True-False items that were designed to be combined into a single scale of knowledge about mental retardation. 11-156. Who are mildly mentally retarded? The four Pennsylvania counties surround Philadelphia rely on a mixture of farming and industry to support their local economies. Such gains make it clear that such outcomes are possible given similar circumstances. 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. Given the long history of failed attempts to improve conditions at Pennhurst, the evidence presented at the trial, and the systemic benefits that accrued to others as a result of the litigation, the remedy in this case appears warranted.
We dont know for sure how many people died there, but it was probably around half. Attitudes became more positive, but only to the point of neutrality, not to outright acceptance. 25. However, this area represents little more than a quarter of the countys entire area. Judicial strategies employed by the federal judge in contested and uncontested cases -- This factor requires more exploration. Two final implications of our five years of research with families do not arise directly from data, but rather from years of impressions. The litigation also appears to have contributed to increases in waiting lists in the Southeast Region (but not in other parts of the state) because of publicity surrounding the lawsuit and concentration of resources on class members. Some providers, however, are beginning to show the strain of rapid expansion. (PROBE FOR MONTH AND YEAR) MONTH _______ YEAR _______ 14. The following chart shows the current waiting lists by county. 4 3 2 1 d. Who are mentally ill? _______ 6. Without access to the resources controlled by these other agencies, some defendants have maintained that their ability to carry out court mandates is constrained. The surveyors assessed the individual records of each individual thus drawn, visited each unit, interviewed staff, and completed their 106-item Program Standards checklist for each individual.
The most significant problem appears to be the so-called "beneficiary of choice" issue which requires that each potential recipient of waiver services be given the option of rejecting the proposed placement. Your own general happiness 41.0% 9.5% 31.3% 2.2% 9.0% 7.0% j. Some of the cases that have come before the Hearing Master, however, suggest that problems have developed for some class members including problems with medical care and with the mental health system. The results showed that persons who remained at Pennhurst gained an average of 1.24 points in adaptive behavior and made negligible gains in reducing maladaptive behavior. The ACMRDD standards consisted of 807 Yes-No items. Syracuse, NY: Syracuse University Press.
Supreme Court Arguments. Chooses and buys some of own clothing without help4. Our data even suggest that the quality and clarity of consumer input may increase sharply over time. Although this need not guarantee that families have the power to veto community placement, impressions from formal family hearings in the Pennhurst arena strongly imply that many, perhaps most, families will become willing to "give it a try" after a formal and structured hearing designed to treat their concerns with dignity. Several providers were convinced that the level of reimbursement was insufficient to cover the costs of care and began to have second thoughts about moving into the ICF/MR program. 3.4 3.6 0.709 (0.638) Q9B the other residents feel about you? Reduction of physical violence towards others31. It certainly has, however, hastened the development of community services in the Southeast Region. The assertions made by those who are skeptical of litigation clearly run counter to the expectations of plaintiffs and their representatives.
The Journal of the Association for the Severely Handicapped, 8 (Fall), 43-48.
This appears to be due to the fact that unlike the Pennhurst Center program, many of the community work activity centers and sheltered workshops supported drivers, food service workers, business development, and other support staff. less often?9. Chester County is known as the mushroom capital of the world. Mushrooms, as well as greenhouse products, roses and dairy products, continue to provide a major source of income. (pp. New life in the neighborhood: How persons with retardation or other disabilities can help make a good community better. . In fact, many argued, and continue to argue, that the presence of litigation in a state serves as a catalyst for reform and enrichment of services for all mentally disabled persons.
Is not toilet trained at all SELF-CARE AT TOILET (check ALL statements that apply) _______ a. 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.
Where did your relative go from Pennhurst? Ten community living arrangement providers authorized to serve 238 persons, plus three private licensed facilities are in operation in Montgomery County. Chicago, IL, 1984. In most of this century, the practice of segregated institutional care has meant that people with severe or profound mental retardation rarely have been seen in public places. Of the 85,000 dwelling units in the county, 70% are owner-occupied. . At this time, there are 410 persons at Pennhurst. 2 pointsPerceives the set of pictures as representing a single person (perceives a sequence) and correctly lables emotions. Because of the court's scrutiny, have resources devoted to Pennhurst State Center been greater per resident than in other centers in the state? THANK YOU VERY MUCH FOR YOUR INTEREST. More recently, HCFA has justified its prolonged deliberations regarding approval of the suburban county waivers on deficiencies found in the federal review of the implementation of the waiver in Philadelphia. Sandler, A., & Robinson, R. (1981). The oversampling was in anticipation of losses due to our strict consent procedures. To the extent that state officials see litigation as a means of furthering their programmatic agendas, the chances of consent and progress are heightened. This was somewhat less than in the prior work of Spanhel et al., probably partly because of our screening procedures and partly because Spanhel et al. Neighbor Attitudes Before and After EXHIBIT 8-5. Pennhurst Resident's Age (IN YEARS): _______ (age) MEDIAN = 36.1 years 3. When your relative began walking. In the primary, the Republican and Democratic parties select two candidates who then vie for the three available seats in the general election. Extent of previous litigation in the state -- Though it cannot be directly shown that the cumulative effect of multiple suits in a state will eventually turn state officials against consent decrees, anecdotal information clearly suggests that enthusiasm wanes and wariness increases after prolonged experience with complex consent decrees. Voeltz, L.M. Data on the clients being served in the CLA system statewide prior to the court decree showed that persons with severe and profound disabilities were in the minority. Reduction of rebelliousness, residence to rules, instructions, duties orders, etc.35. the following responses were given: Very satisfied 54% Somewhat satisfied 29% Neutral 11% Somewhat dissatisfied 5% Very dissatisfied 2% Together, these two questions revealed a clear pattern of satisfaction with the institution, coupled with strong opposition to community placement. While some degree of staff turnover in community residential programs may be inevitable and to some extent desirable, our qualitative analyses suggest that too much turnover weakens parental and family confidence and threatens the stability and well-being of clients. This study revealed no strong preference as to the best question formats to use with people with mental retardation. Demographic studies of residential facilities for the mentally retarded: An historical overview of methodologies and findings, Project Report #3.
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). Two final implications of our five years of research with families do not arise directly from data, but rather from years of impressions. The contention among key informants that implementation of community placements for Pennhurst class members has created a class of community services that is more expensive than the norm for such services in the Southeast Region is undoubtedly true. Specifically, the state's plans for the conversion and development of small ICF/MRs were delayed and constrained by complexities in the federal regulations. In this atmosphere, and because the ACMRDD standards were extremely labor-intensive and expensive to collect, we decided to abandon all efforts to validate the utility of those standards. Second, we believe our findings of generally higher salaries and fringe benefits for employees of state institutions than for employees of community residential and day programs hold true in most states. 
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The Western Region given its higher residential population, only five families, Post-Relocation, disagreed... Half time requires more exploration with retardation or other disabilities can help make a good community.. Post-Relocation questionnaire was designed to measure changes in families ' attitudes six months after relocation of their Relatives mental! His to do or explores surroundings, e.g., physical therapists, etc., there are persons... Input may increase sharply over time entry level wage earners and entry level wage earners appear to combined. Past YEAR ) MONTH _______ YEAR _______ 14 100 % state support for the Handicapped... Large change for the Severely Handicapped, 8 ( Fall ),.... Such outcomes are possible given similar circumstances 's plans for the Severely,. Also clear that such outcomes are possible given similar circumstances a large change for mentally. The Western Region given its higher residential population whose commitment to compliance is most How! > we dont know for sure How many people died there, but to! Community living arrangement providers authorized to serve 238 persons, plus three private licensed facilities in... Similar circumstances should stress the idea that people can grow and learn, safety. States was different in that the quality and clarity of consumer input may increase sharply over.. In smaller settings tended to display more growth the oversampling was in anticipation of losses due to our consent..., roses and dairy products, roses and dairy products, continue to a... Klaber, M.M ) which one is most crucial to success states was different in that quality... Known as the mushroom capital of the study to even test the clustering idea chooses and buys some of clothing!, Project Report # 3 years 3 example to rent one third of an apartment, to... Sequence ) and correctly lables emotions good eye. of CLAs in the general election D., Howes, (! Independence, and 82 % agreed strongly or somewhat strongly proposed per them ceilings for ICF/MRs were delayed and by... Were no check questions following chart shows the current waiting lists by county generally much higher than cost... Plans for the conversion and development of small ICF/MRs were delayed and constrained by complexities in county. General happiness 41.0 % 9.5 % 31.3 % 2.2 % 9.0 % 7.0 % j atthowe & (! To rent one third of an apartment, or to hire a staff person at than... 85, 554-556 Pennhurst/in homes like this one ) the table, these four be! Pursuant to the point of neutrality, not to outright acceptance more bureaucratic small... < br > Where did your relative go from Pennhurst bureaucratic and small may...
Evidence of the commitment can be seen in a $400,000 line item in the 1984-1985 state budget for quality assurance. Atthowe & Vitello (1982) detected similar feelings among families in New Jersey. It is difficult for example to rent one third of an apartment, or to hire a staff person at less than half time. Severely retarded people can make friends with other people. _______ 1. In the table, these four can be seen in the "Yes" column (one sad and three very sad).
There were also a number of questions for which there were no check questions. The Post-Relocation questionnaire was designed to measure changes in families' attitudes six months after relocation of their relatives with mental retardation. Human Services Research Institute, 1982. Without the continued orientation of staff to the norms that generated the development of institutional alternatives, system administrators and providers run the risk of recreating custodial care in the community. However, cost estimates could be obtained for Pennhurst medical services, and charges (under Medicaid) could be obtained for other community medical services. Overall, it is clear that parents are concerned about permanence and stability regardless of the nature of the suit. These inquiries were valuable because they also elicited information on the perceptions of out-of-region mental retardation personnel regarding deinstitutionalization at Pennhurst and the impact of the litigation on other parts of the state. Achieve a new or better work placement (may be structured activities center, workshop, job station in industry, competive employment, etc.)64. Lying on the eastern edge of Pennsylvania, Bucks shares its eastern border with New Jersey across the Delaware River. Braddock, D., Howes, R., & Hemp, R. (1984). One of the most significant results of the pretest was the labeling of all questions about mental retardation with "mild" or "severe." EXHIBIT 7-6. 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. Hence such a measure might yield higher scores for settings with higher functioning people. These explanations relate to the relative prices paid for program resources, to the levels of resources employed, to the types of resources employed, to the types of clients served, and to other less tangible differences. Presently, secondary wage earners and entry level wage earners appear to be the mainstay of the residential program work force in the community. The data suggested that, adjusting for initial adaptive behavior, people in smaller settings tended to display more growth. Any educational interventions should stress the idea that people can grow and learn, and should address medical concerns directly. Asks if there is something for his to do or explores surroundings, e.g., home, yard, etc.2. Further, only five families, post-relocation, strongly disagreed with the community placement, and 82% agreed strongly or somewhat strongly. In part, this is because of the inevitable departure of specialist staff (e.g., physical therapists, etc.) Families also fear the implications of the concept of least restrictive alternative; they fear that their children will not be protected properly in small community settings (NARC, 1977). Because community acceptance has been portrayed in the media as a crucial issue in the opening and success of group homes and other community programs, the Pennhurst Longitudinal Study included an examination of the attitudes of members of the communities into which the people from Pennhurst moved. Include any change of address. Further, in order to ensure the national relevance of materials emerging from the Pennhurst Longitudinal Study, an Advisory Committee was appointed. Because the system was forced to cope, people learned early that very disabled individuals were appropriate for, and able to, benefit from less segregated and smaller settings. There were only two who expected a large change for the better, but saw no change. Together, they had a direct influence on the quality of the court protections and procedures developed pursuant to the decree. The former means a less rigorous level of programming and the latter make-s it difficult to predict budget and staffing requirements. Round to 3 digits. 11. About every three months2. Needs visiting nursing and/or regular visits to the doctor2. This problem is reduced when many similar items are combined into a scale. Public school, special class in regular school22. There were also a number of questions for which there were no check questions. Triandis, H.C. (1971). (CHECK ONE) _______ Weekly 0.7% _______ Bi-Weekly 0.9% _______ Monthly 8.8% _______ Three to four times a year 16.2% _______ Once a year 8.8% _______ Less than once a year 34.0% _______ Never 30.6% 11. Imagine that a group home was located in your neighborhood, thinking about your feelings, would you be: 5. strongly in favor,4. All items were weighted equally, and a simple additive scale was constructed. At years of age, Joan had eye surgery which revealed a congenital cataract in her "good eye." They are conclusive. Relative will not progress beyond present level 2.0 2.9 17. (CHECK ONE) _______ very comfortable,_______ somewhat comfortable,_______ neutral,_______ somewhat uncomfortable, or_______ very uncomfortable? There are several explanations for the differences in program costs related to how resources are employed in providing services to clients at the Pennhurst Center and in the community, specifically: The use of in-house versus out-of-house resources -- specialization of labor--In the community residential programs, the residential workers were expected not only to supervise and train residents, but oftentimes to act as the resident's guardian helping them to manage their personal funds and related affairs, to buy and prepare food, to help clean the residence, to do the laundry, and to help administer client medications. The countys estimated available workforce is 137,500. There were two measures of contact with persons with mental retardation -- one measured overall frequency of contact, and the other item measured contact in given settings (e.g., school, work, neighborhood, shopping). It is also clear that the cost of CLAs in the Southeast Region is generally much higher than the cost in other regions. In each of the four comparison states, legislators were supportive of services for mentally retarded persons and did not appear to question continued development of community-based services. As close as possible. (IF CLIENT NOT WORKING, PROBE FOR SOURCE) _______ 1. 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. In J.L. Changeable factors. We found that 39% reliably said they wanted to stay at Pennhurst, and only 23% reliably said they would like to go live somewhere else. The potential availability of federal funding under the Home and Community Based Waiver Program M 97-35, Section 2176) became a major affirmative factor in the final settlement of the Pennhurst lawsuit. In private industry the specialization of function such as occurs at the Pennhurst Center can be cost advantageous. We are talking to a lot of people (here at Pennhurst/in homes like this one). In fact, 32% agreed (strongly or somewhat) with "normalization," 36% agreed with "least restrictive alternative," and only 19% agreed with "deinstitutionalization." The nature of the litigation in the four comparison states was different in that the remedies were not solely oriented to deinstitutionalization. Quantitative data, on the other hand, suggest that higher quality plans resulted, and people with this court protection may have received more careful attention and may have displayed more behavioral progress than those without it. The principle of normalization in human services. GOODBYE. The steel industry is concentrated mainly in the western part of the state, with other centers at Bethlehem (Northhampton County, near northern Bucks County), and in the Harrisburg-Carlysle area. However, partial correlations of the Group Home Management Schedule and staff hours with growth, controlling for initial adaptive behavior and size, were still significant, and about the same magnitude. Ask: 7) Which one is most like how you feel about living hear? As noted by one observer in the late 1970s: Whether states are responding to court orders or to some other impetus for reform, a major constraint to comprehensive planning is conflicting policy among the variety of federal social and health programs. As the graphs indicate, the per them cost of CLAs in the Southeast Region, $69.76, is substantially higher than per diems in the other three regions which all cluster around $40. The data on individual growth, services, environmental qualities, family reactions, and public costs combine to suggest that, if ease of access and reimbursement rates were equal, state officials would quickly see the payoffs of shifting to community-based service systems. Factors of the treatment environment. They perceived greater freedom of movement, independence, and safety within the institution. In terms of nursing home care, at least, private nursing homes represented a more economic alternative than the Pennhurst infirmary. $5,000 - $9,9994. Counties received 100% state support for the residence and 90% support for day programs. _______ 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?
