POLICY ANALYSIS SERIES ISSUES RELATED TO WELSCH V. NOOT / NO. 5 ADMISSIONS/ READMISSIONS TO STATE HOSPITALS
SEPTEMBER 1, 1980 to MAY 31, 1981 : THE BEHAVIOR PROBLEM ISSUE
I. INTRODUCTION Under the Provisions of the Welsch v. Noot Consent Decree, the State is required to reduce the number of mentally retarded persons residing in state hospitals to no more than 1,850 by mid-1987; 2,375 by July 1983. There are approximately 2,500 individuals with mental retardation currently residing in Minnesota's eight state hospitals.
While setting specific goals for deinstitutionalization may hasten the relocation of many individuals, it also highlights critical issues. Among these is the need to develop appropriate community residences, services and programs for persons with severe or profound retardation, individuals with behavior problems or residents in need of health and medical care. The further success of deinstitutional ization efforts will depend greatly upon the State's ability to develop and maintain alternative conmunity living arrangements for persons in need of prolonged and intensive residential programs.
"Ceinstitutionalization does not simply involve the placement of mentally retarded persons into the community, it also involves the establishment of these programs intended to reduce the need for initial admission and readmission." (Scheerenberger, 1981, p. 6)
The literature indicates that behavior problems are a major reason for adrnissions/readmissions to public institutions. Similarly, an analysis of state hospital admission reports indicates that behavior-related problems are a primary reason for admissions in Minnesota. Therefore, if admissions to state hospitals are to be avoided, the behavior management skills of families and community service providers must be further developed.
The purpose of this paper is to: --briefly review literature related to behavior problems and movement trends
1 The state hospital at Anoka does not have a mental retardation program. During a special session of the 1981 Legislature, a bill was passed which calls for the closing of Rochester State Hospital by June 30, 1982. Administrators of that hospital anticipate that all residents will be transferred or relocated and the facility closed by January 1982. There are approximately 80 mentally retarded persons currently residing at the hospital.
DEVELOPMENTAL DISABILITIES PLANNING DEPARTMENT OF ENERGY, PLANNING AND DEVELOPMENT
201 CAPITOL SQUARE BLDG. 550 CEDAR STREET ST. PAUL, MN55101 l 612/296-4018 Policy Analysis Paper #5 August 31, 1981 Page 2
--present a summary analysis of admission/readmission reports from the eight state hospitals; and
--identify implications for state policy and planning relating to the development of community residential services.
II. REVIEW OF THE LITERATURE Several studies have identified maladaptive behaviors and health problems as the major reasons for readmission and community placement failures (Mayeda & Sutter, 1981; Pagel & Whitling, 1978; Sutter, Mayeda, Call, Yanagi . & Yee, 1980; Keys, Boroskin & Ross, 1973). Other research indicates that individuals' abilities in self-help and social skills are not always predictive of placement potential. Sutter et al (1980) found that the relative sophistication of the unsuccessful persons in self-help and social skills could not, in many cases, overcome the negative impacts of maladaptive behavior; and in fact, individuals who failed in community placements "were significantly more proficient than were successful clients in personal and community self-sufficiency "and in social responsibility" (p. 264). Ir! another study, Page l and Whitling (1978) concluded that failures were not typically attributed to deficits in self-help skills.
The problem then is how to control and/or effectively manage behavior problems in community settings. Part of the answer may lie in the placement process itself. Mayeda and Sutter (1981) suggested that the compatibility between an individual's behavioral characteristics and the caregiveris expectations regarding the management of behavior problems may be of some consequence. The findings from their study suggested that "...even clients with a large number of behavior problems (five or more per client) could be successful in community care if placed with care providers who indicated a willingness to manage the behavior they exhibited" (p. 380). In an earlier study (Sutter et al, 1980), researchers concluded that caregiver-client pairs that were unsuccessful were notably more mismatched for maladaptive behavior than were the successful caregiver-client pairs.
Lakin, Bruininks and Sigford (1981) stated similar conclusions. They suggested that policy-makers consider developing a system whereby clients' characteristics are matched with caretakers' "tolerances"for those characteristics. Moreover, "... researchers need to address the effectiveness of training programs...in enhancing caretakers', and potential caretakers', tolerance of and effectiveness in dealing with specific client behaviors" (p. 400).
The current review of the literature indicates that level of retardation is not consistently indicative of failure or success. For instance, one study (Sutter et al, 1980) found that 63 percent of the successfully placed individuals were classified as severely or profoundly mentally retarded, while 71 percent of those who "failed" in conununity placements were borderline, mild or moderately mentally retarded. It is true nonetheless that persons with severe or profound mental retardation are less likely to be placed in community settings; that they are more likely to "fail because of
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health-related problems than for maladaptive behaviors (Eyman & Cal 1, 1978; Page l & Whitling, 1978; Landesman-Dwyer 8 Sulzbacher, 1981 ) .
In 1979 Scheerenberger (1981) surveyed 278 public residential facilitics in the United States. He estimated that 77.4 percent of the residents of those facilities were severely or profoundly retarded. Althouqh the total population of institutionalized persons is gradually declining (on a national basis, the average daily population decreased approximately four percent annually during the years 1972 to 1979), barriers to community placenlent remain formidable. Scheerenberger described these barriers in terms of seven factors:
--availability of alternative living facilities; --quality of available community living facilities; --availability of community support services; --quality of community support. services; --funding; --number of community program personnel ; --adequacy of training. While medical services, the availability of community support services and educational programs were generally rated as being "adequate for mildly and\ moderately retarded students, the same services for severely and profoundly retarded persons were considered to be less than adequate (at the time of the national survey, Public Law 94-142 was relatively new). Scheerenberger noted that "adult programming and behavior management, regardless of retardation, were basic services unifornl]y judged inadequate throughout the country" (p. 8).
Scheenberger's study indicated further that the training of professional personnel (in medicine, education and adult programming) was considered to be inadequate to meet the needs of more severely handicapped individuals; and behavior management personnel generally lacked "sufficient training to deal effectively with mentally retarded individuals regardless of their level of intelligence" (p. 10).
All of this suggests that, unless substantial chanqes are made in the focus and delivery of community services, public institutions will continue to be the primary treatment sites for persons with severe/profound mental retardation and individuals with behavioral or medical problems (Scheerenberger, 1981; Landesman-Dwyer & Sulzbacher, 1981); hence the rate of reinstitutionalization will decrease.
Successful deinstitutionalization implies more than placement in community settings. How individuals adapt to those environments is equally important "adaptation" is not necessarily synonymous with "normal" behavior. Seltzer, Sherwood, Seltzer and Sherwood (1981) suggested that persons should be assessed on an individual basis. This concept has particular relevance for persons who are severely or profoundly retarded since they may not, in many respects, be able to measure up to "normal" standards. Instead, success should be measured in relative terms: how well or how much an individual improves and adapts to a particular environment.
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This concept of community adaptation is important for two reasons: (1) it lifts much of the "blame" for conmnity failure from the shoulders of the retarded person because he/she need no longer measure up to unrealistic standards of "normalization"; and (2) it may help encourage persons in the community to recognize relative improvement as genuine achievements rather than as failures to reach absolute levels of performance.
"As the population being released from institutions increasingly consists of the "hard to place" (including retarded persons who are medically fragile, multiply handicapped or elderly, those with severe behavior problems, and the more severely and profoundly retarded), an analysis of the effects of reinstitutionalization on these types of individuals becomes more and more important. Because the needs presented by these types of persons are very complex, it cannot be casually assumed that deinstitutionalization will produce the uniformly positive effects hoped for..." (Seltzer et al, 1981, p. 86)
A study of deinstitutional ization must necessarily include a review of state hospital admissions and readmission. It seems logical that before problems can be ameliorated and institutional admissions avoided, program planners and policy- makers must first know what kinds of behavioral problems exist, and then, why persons are being referred to state hospitals. The following analysis is an initial, step toward identifying these two important poJicy variables.
III. METHODOLOGY This analysis of admissions/readmissions is based upon a review of state hospital reports on file in the Department of Public Welfare, Mental Retardation Program Division. In as much as admission reports from the individual hospitals vary greatly in content, quality and format, this is a summary analysis of admissions and readmission and the circumstances leading to placement in a state hospital.
This analysis covers the nine-month period from September 1, 1980 to May 31, 1981. The Welsch Decree--which restricts admissions to state institutions--went into effect September 15, 1980.
Much of the summary data contained here in does not include admissions to Cambridge State Hospital. Admission files from that hospital report only aggregate data; information on individuals and the circumstances surrounding admissions was not available. Cambridge, which entered into a separate consent decree in December of 1977, became subject to the provisions of the Welsch Decree on July 1, 1981.
For the purposes of this analysis, an admission was classified as "behavior related" if maladaptive behavior or behavior problems were cited within the report. Although admission reports varied greatly in content and quality, at least an indirect relationship between behavior and state hospital placement could be inferred when behavior was mentioned. Policy Analysis Paper #5 August 31, 1981 Page 5
An example of a behavior-related admission might be an individual in need of health or medical care services; comnunity facilities were unable to provide the necessary services because they could not, at the same time, deal with the person's behavior problems. In many cases behavior-related admissions were more obvious, e.g., individuals admitted to a hospital for evaluation or programming following incidents of aggression or property destruction. IV. RESULTS During the nine-month period from September 1, 1980 to May 31, 1981, there were approximately 120 admissions/readmissions to Minnesota's eight state hospitals. The admissions ranged from a low of two at Rochester State Hospital to a high of 34 at Cambridge. Admission reports indicated that, where specified (N=78), 41 percent were "new" admissions (i.e., the report classified an admission as being "new," in almost all cases it was not possible to determine if an individual had been institutionalized in the past at another hospital), while 59 percent were 'readmission" (i.e., the report indicated that the individual had resided at the hospital at least once before--includes prior short-term, respite care admissions). In 42 instances the reports did not specify whether the individual had been released from the hospital before or if it was a first-time admission. Table 1 Admissions to. Minnesotans Eight State Hospitals September 1, 1980 to May 31, 1987 (total admissions = 120) ------------------------------------------------------------------------------------------------------------ Admission Status N % ------------------------------------------------------------------------------------------------------------ New Admission 32 41.0
Readmission 46 59.0
Unspecified 42 Total 120 ------------------------------------------------------------------------------------------------------------ Personal Characteristics Most reports did not identify the FIR characteristics of the individuals being admitted. No psychometric data were indicated in the 34 admission reports from Cambridge; and of the remaining 86 reports from the other seven hospitals, only 17 indicated an individual's level of mental retardation. State hospital social work representatives (MR Admissions Evaluation, 1!381) estimated that 63 percent of all persons admitted during calendar year 1980 were severely/profoundly mentally retarded; 23 percent moderately retarded; and 14 percent mild/borderline. They also estimated that nearly 80 percent of respite care admissions were readmission; one- third of all other admissions were readmission; and one-third of all court commitments were readmission.
Policy Analysis Paper #5 August 31, 1981 Page 6 Table 2 MR Characteristics of Persons Admitted to Minnesota State Hospitals September 1, 1980 to May 31, 1981 (total N=86; respondents= 17) ------------------------------------------------------------------------------------------------------------ Degree of Mental Retardation N % ------------------------------------------------------------------------------------------------------------ Profound (19 and below) 1 5.9
Severe (20-35) 5 29.4
Moderate (36-51 ) 4 23.5
Mild (52-68) 6 35.3
Borderline (69-84) 1 5.9 Total 17 100.0 ------------------------------------------------------------------------------------------------------------
Reports from Cambridge did not identify any individual characteristics of persons admitted to that hospital during this nine-month period. Admission reports from the other hospitals (total N=86) indicated the following resident characteristics: Age: N=60 Sex: N=86 Range=2 to 59 years Female=25 (29.1%) Mean=26.1 years Male=61 (70.9%)
Twenty-three (23) out of 86 reports indicated tional disability; several were multiply hand --in addition to MR). Place of Prior Resident While some reports indicated the type of most recent residential placement (i.e., the community placement from which the individual was admittted many did not specify how long the person had been living in that residence. Where it was specified (N-30) the range was from three months to 16 years; the mean was 3.8 years.
Table 3 shows admissions to each state hospital during the nine-month period ending May 31, 1981. The table indicates admissions by type and the setting from which individuals were admitted. Respite care--an informal admission--constituted 42.5 percent of all admissions. Thirty-nine percent (39.2%) of all admissions (N=120) came from an ICF/MR.
Disregarding the ten admissions to Cambridge (for which no detailed information is available), 21 (81%) of the 26 admissions from natural or adoptive homes were classified as respite care/parental relief admissions.
Examples of "other public institutions" in Table 3 would include the Braille and Sight Saving School at Faribault or another state hospital (most likely transfer). Policy Analysis Paper #5 August 31, 1981 Page 7
Table 3 Admissions to State Hospitals by Facility, TYPQ and Prior Residence September 1, 1980 to May 31, 1981 (total admissions = 120)
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Behavior Problems Table 4 is an analysis of admissions and behavior problems. The table does not include admissions to Cambridge State Hospital. The remaining admission reports (N = 86) specify behavior or behavior-related problems in almost twothirds of the cases (64.0%); 33.7 percent made no mention of behavior-related problems; and in two instances, no reason for admission was stated. Table 4 State Hospital Admissions: Behavior Problems September 1, 1980 to May 31, 1981 (
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ICF/lVIR Characteristics Admission/readmission reports from the other seven hospitals (N = 86) indicate that an ICF/hlR was the most recent place of residence for 38 individuals (44. 2%) . In seven (7) instances, no descriptive characteristics of the ICF/hlR were identified.
Table 6 Admissions from ICF/llRs: Size Characteristics
Only 19 of the 38 admission reports indicated how long an individual had been living in a group home prior to admission. IJhere specified (N = 19), the length of residency in an ICF/MR ranged from three months to eight years; the mean was 25.0 months. Sixty-three percent (12 persons) had resided in those placements for 14 or fewer months.
Behavior Problems Of the 38 admission reports on individuals coming from an ICF/MR placement, 30 (78.9%) specifically mentioned behavior problems. Thirteen (13) reports identified an individual as having been a resident of a hospital at least once before; 9z.3 percent of these readmission were behavior-related--only one of the 13 readmission was for respite care purposes.
Twenty-two (22) reports did not specify if an individual had been released from the hospital before or if it was a first-time admission.
(72. 7%) were behavior-related;Sixteen of the 22 six reports made no mention of behavior problems.Three of the 16 behavior-related admissions (18.8%) in the unspecified category were classified as respite care.
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Table 7 State Hospital Admissions from ICF/MRs
Reasons for Admissions The following is a synopsis of the statements most often cited as reasons for seeking an admission to a state hospital. The narrative is neither definitive nor exhaustive, rather it attempts to convey a sense of the circumstances and pressures which compel a family, a group home or a community facility to place an individual in a state hospital.
In many cases there appears to be no single reason for admission, but a combination of factors. Though there is much overlap and ambiguity in admission reports, one thing seems apparent: to many families or conmnity facilities, the state hospital is (or is perceived to be) the only available resource. Respite Care Admissions Admissions classified as respite care/parental relief accounted for the largest number of admissions during the nine-m~nth period from September 1, 1980 to Flay 31, 1981. The reasons for those temporary placements were numerous and varied. Quite often, respite care admissions were more than simple, shortterm relief from care responsibil ities-they were coupled with requests for evaluation, intensive training or medical and health care services.
In many instances, reports indicated that appropriate respite care services could not be located in or near the comnunity; behavior problems made continued
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residence ~n the home difficult and very often precluded the use of community services-- i f those services existed. The inference is that "appropriate" meant either a sitter capable or wil 1 ing to care for a retarded child, or a respite
care program with staff proficient in behavior management skills.
In three instances an admission report stated that medical care was the primary reason for seeking state hospi tal/respite care placement. Either the group home or family could not provide the necessary medical care--and alternative community services were not avai la ble--or behavior problen)s compl icated attempts to provide those set-vices.
In nine cases a falni ly or group home sought respite c~re because they could not control an individual. Seven of the nine admissions seeking evaluation were associated with behavior problems. In two instances an individual had struck out at or otherwise threatened the staff or other residents. Other reports indicated a need for respite care with intensive training in personal care
ski 11s. Two reports indicated that respite care admissions were sought because there were no vacancies in other community facilities, e.g. , group homes.
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Medical or specialized supervision was a major reason for several informal admissions. Reports indicated that local facilities were either unwilling or unable to provide services to persons with medical and health care needs.- In most cases continuing care in a particular setting was deemed inappropriate because an individual exhibited behavior problems. For example, a hospital or nursing home might be unwilling to provide post-surgical medical care on a long-term basis because they could not, at the same time, provide the necessary supervision. In other instances, individuals (because of recent surgery, sui cide attempt, or deteriorating physical conditions) were referred to a state hospital for an evaluation of care needs. Generally, admissions in this category came from a nursing home, a community hospital or a group home.
Comitted
All six of the admissions identified as "comnitted" indicated that the individ ual had come from a that the group home behavior problems. problems as well as services. group home. In four cases, the admission report stated had closed--only one of those four reports mentioned any In the remaining two cases, both reports indicated behavior the unavailability of alternative community placements or In these three instances, behavior problems were characterized as being severe. Additionally, the individuals required considerable attention with regard to personal care.
Returns from Provisional Discharge
Four persons were readmitted following a return from provisional discharge. Three were admitted from group homes; the other placement was unspecified. Three of the four were identified as having severe.behavior problems: disorderly conduct, assault, aggressive behavior, criminal damage to property, tem per tantrums; threats of suicide. One report indicated only that placement in an out-of-state group home had not worked out. One report stated that there
had been a lack of day programming.
Hold Orders
Twelve individuals were admitted on hold orders. Nine reports indicated that the individuals had been admitted from an ICF/hlR--two reports did not specify the most recent placement; one was admitted from the family home.
Eleven of the twelve reports indicated that behavior problems were severe;
that other residents, staff or property were threatened by an individual's behaviors: physical threats, acts of aggression/assaultive behaviors, firesetting, physical abuse, property destruction.
Among the reasons stated for seeking admission to a state hospital were the staff's inability to control an individual's behaviors, the need to avert more serious episodes of physical aggression or property destruction, lack of existing community facilities which were capable of providing the necessary services and supervision.
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Transfers Admissions classified as "transfers" indicated that the individuals were being
moved in order that they might be closer to their family or, in the case of a transfer from Anoka State Hospital, to obtain more appropriate programming.
V. DISCUSSION
Although this analysis of admission reports is not totaJly conclusive, it does give some indication of the nature of admissions; it also raises some import ant issues.
It is apparent that many families and convnunity care providers rely upon state hospitals for respite care services. Approximately 80 percent of the admissions from family homes were for parental relief. The admission reports suggest that
had those services been available in the community, many of these short-term informal admissions might have been avoided. Social work representatives from the mental retardation program of the state hospitals (hlR Admissions Evaluation Report, 1981) estimate that one-half of all admissions during 19S0 were for respite care purposes.
Nearly 60 percent of the informal admissions (other than respite care) specifically mentioned a lack of appropriate community services. Additionally, several reports indicated that community support services (e.g. , nursing homes, community hospitals) could not manage or would not accept persons with behavior problems. This is similar to Scheerenberger's findings (1981) which indicate that behavior management skills are generally lacking in community settings.
A significant proportion of the admissions .(3g%) came from qroup homes. The literature suggests that smaller facility size is more indicative of personalized attention, and yet data from the admission reports suggest that perhaps as many as two-thirds of these admissions came from relatively small ICFS, i.e., 15 or fewer residents.
It is likely that some characteristics of the service delivery system contribute to the failure of some of the comunity placements. For instance, a national survey of community residential facilities in 1977 identified personnel issues--recruitment, retrainin? and development of staff--as major management problems (Bruininks, Kudla, Wleck & Hauber, 1980). Discontinuity in staf fing patterns and inadequately trained personnel will have some impact upon the success or failure of many community placements.
The distinction between providing services and meeting individuals' needs must be reco~nized. As Lakin, Bruininks and Sigford (1!281) suggest, "care" and
"services" are not necessarily synonymous terms: "It is essential to assess what services are needed by clients, regardless of whether or not they are available in the area in order to measure "need." (Assumptions about who can benefit from what kinds of services must be made explicit. ) (p. 407)."
.
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The Welsch Decree formally acknowledges this concept. By the terms of the agreement, the annual, required assessment of hospital residents is to be made "in terms of actual needs of the resident rather than in terms of services presently available." Furthermore, individual counties and the Commissioner of Public Welfare are to use these "assessments in planning for and implementing the reduction in institution population. . and in developing plans for new' residential and non-residential county based servicesti (Welsch v. Noot Consent Decree, 1980, p. 6, paragraph 21).
VI. IMPLICATIONS FOR PLANNING
planning for community programs and services must consider, among other thirgs, the rel~t tutions: problems; Eyman and number of ve needs of-two ~articular populations residing within public insti(1) mildly and moderately mentally retarded persons who have behavior and (2) persons who are severely or profoundly retarded. Call (1978), among others, have shown that a significantly larger mildly and moderately retarded uersons in institutions have severe behavior proble~s than do mildly and moderately retarded individuals living in the communities. Because they function at relatively higher levels than do other persons in institutions, they are considered more likely candidates for community placement. Their successful placement, however, will depend upon the behavior management capabilities of individual service providers in the comnunity.
Severely and profoundly retarded persons have traditionally been difficult to place into community residences. Although persons who are severely or pro foundly mentally retarded may represent a relatively small proportion of the total MR population, they constitute a significant proportion of those in need of lifelong services; and an increasing percentage of individuals in public residential facilities (Landesman-llwyer & Sulzbacher, 1981 ; Scheerenberger, 1981). And yet if deinstitutional ization is to be considered successful com munities must develop services and residences geared toward serving these individuals. While the challenges presented by these two groups of persons may be formidable, they are not insurmountable. Minnesota is heavily reliant upon ICF-certified programs but other exist.' These alternatives merit consideration for two reasons: (1: tion to being sound programnatically, they may be cost effective re" institutional care; and (2) they may inject more variability into a which is beinq asked to accommodate a very heterogeneous population models do in addiative to system of individ uals. Some p~ssible alternatives for addressing the needs of behavior problem clients might include: -Building capacity within existing programs (Bruininks, et al, 1980; Scheeren berger, 1981). An example might be an increase in the use of specially trained foster care homes. To date, Minnesota has not made extensive use of foster care models. Another example might be use of existing ,group homes with specially trained staff persons.
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Developing specialized services and using existing resources to bette~ advantage, e.g. , community mental health centers and state hospitals. A report by the Chestet-field Health and Mental retardation Services (1979) cites several -behavior modification programs which work
concurrently with clients and family. One approach is to link respite care at state hospitals (which includes evaluation and behavior filodification programming) with parental visits and training in behavioral techniques. -The same report, and many others (e.g., 14ray, Browne & Koster, 1978), suggests the efficacy of crisis/home intervention teams. Again, the emphasis is upon parent trainin~in conjunction with behavioral modification programming. Problem resolution in the home is an essential component of
these models.
-Several authors suggest greater attention be given to placemnt strategies. Potential for success is much greater where facility staff are more willing and able to deal with disruptive behavior problems (Nayeda & Sutter, 1981; Sutter et al , 1980). Pre-service and in-service training for residenti~l __, staff persons is a primary consideration.
-Adoption of a zero rejection model will facilitate community placement and
the development of alternative services. Implicit in this model is the c~n~e~t that no one will be rejected simp~y because they manifest difficult placerwnt problem. Instead, counties, comiiunities and caregivers adopt a positive attitude about providing necessary services. Institutionalization is considered only after all other alternatives hav~ been rigorously explored a~~d thoroughly exhausted. The major advantage oi- :!lis ::-lodel is that counties and communities "learn" not to rely upon state institutions, but rather ~loon their own initiatives and resources. Finally, the fol owing excerpts are from a paper on behavior pt-oblems and lnsti t ut i ona 1 i zat i on.J They summarize a variety of programmatic c ancj phi losopnica "l approaches to beh~vi~r management and the. reduction of institutional admissions:
"PHILOSOPHICAL ORIENTATION.
To assure the avai labi 1 ity of a conlprehensive array of cornmunity based residential and ha bilitative services for persons ii need of supportive residential living, good leadership and a dogged comnitrnent to successfully creating such a system is required. Staff have to be resolved to keep the "IN" door to the institution barred but to not deny services for persons in need. This means that Prevention' of Institutional ~clc:issiocs and IReturns:~speci ally Those Due to
By order of the U.S. District Court, the Iiichigan Department of !Iental Health, and others, are to develop and implement "a comprehensive system of appropriate, less restrictive ha bilitative training, and support services" for all residents of the Plymcuth Center for Human Development by Janaury1 , 1984. These excerpts are printed with permission of the author.
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staff are going to have to be tenaciously solution-oriented rather than problem-oriented. Instead of regretfully accepting someone in
the front door to the institution "because of a problem," staff must aggressively pursue alternative means for addressing the client's, family's, or provider's particular needs which resulted in a knock on the door. This also means that state or county agencies will have to increase their awareness of and sensitivity toward responding realistically to the major needs perceived by community providers. . .
AN ONGOING RATE OF DEVELOPING COMPONENTS FOR THE COMPREHENSIVE ARRAY OF COMMUNITY SERVICES
must be established to accommodate both cur rent needs (deinstitutional ization) and future needs (requests for new admissions or returns). This entails generating an adequate con tinuum of supervised to relatively independent residential alternatives to be able to address the varied needs of persons seeking assistance. To do so would contraindicate complete reliance on only foster care or group homes or apartment programs. A combination of options will help prevent the incidence of persons who "wouldn't fit" into a more limited number of established molds.
There is significant value in knowing the needs of the persons awaiting the opportunity for community living and then proact ively developing/recruiting/training providers specifically expected (and expecting) to work with these persons. ..proactive development,of particular types of residences based on the particular needs of the clients is the only way to assure 'community living opportunities for all persons in wheelchairs or with adaptive needs. Various types of supports for natural families should not be overlooked as one of the tools for precluding the need for an alternative residence. It should be noted that the larger the number of community living alternatives that evolve, the greater the capacity of that system to absorb new persons with residential needs into existing vacancies and to accommodate more intense (i.e., behavioral) needs. . .
ADEQUATE FUNDING is required to assure adequate opportunities and support for persons who are comnunity-placed. So often there is a very large gap between what persons consider a reasonable amount to spend for institutional care and what they consider acceptable for corrrnunity based homes. . .To the extent that community living can be developed to provide a more normalized, personal, and appropriate quality of life. greater parity in funding between the institution and the comnunity is warranted. . .
There needs to be a sensitivity toward providing varied costs based on the degree of"needs of respective clients. There is no better way to assure that more challenging clients will not have the opportunity to successfully leave an institution than by providing a flat rate or a rate with limited flexibility to buy services for a very heterogeneous group of individual clients. . .
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SIZE OF THE RESIDENTIAL SETTING may be a factor influencing interpersonal relations, the hominess of the setting, and how acceptable the neighbors find the home... . . .there is greater potential for clients to identify (and emulate) significant role models in the smaller adequately staffed homes than in larger residential settings. Staff activities tend to be more cli ent-oriented and the potential for consistency in implementing techniques for behavioral programs (teaching new behaviors or ameliorating other behaviors) is increased with smaller numbers of staff and residents interacting. Also, the smaller the number of clients in a setting with adequate staffing, the smaller the apparent diffusion of responsibility for dealing with individual client needs. . .
ADEQUATE STAFFING AND STAFF TRAINING are essential to allow especially those clients with larger repertoires of challenging behaviors to successfully live in normalized home environments.
. . .to preclude some persons from being forced to leave the home established, it will be necessary for all staff to go through pre-service training and for some to receive specialized training in behavior modification and behavior management.
. .Training should be geared toward client-specific needs and challenges. . .
. . .Tied to the provision of adequate staffing is the provision of adequate pay and benefits for staff in the community settings. ..Again, the issue of parity needs to be considered here to assure the ability to attract and retain an adequate number and quality of trained staff to run good programs.
ADEQUATE SUPPORT SERVICES are essential for a viable community service system. Predominant among such supports is a good case management, follow-along system.. .
[Other support services might include] . . .a crisis center hotline with on-call staff available to "trouble-shoot" problems which arise when the provider can't reach the case manager. ..[or] Peer groups for providers can be established either with foster care families or with group homes and apartment program administrators. . .
An additional type of support. . . is the "trainer-in-the-home" program. This program can provide. . .for a staff member to go into a natural family's home if a behavioral crisis arises with which they need assistance. The "trainer" would work both with the client and the family. . .
AMPLE AGE-APPROPRIATE/NEED-APPROPRIATE DAY PROGRAMS (geared toward the individual needs of clients) can enhance social, emotional, and adaptive development. Whether good school programs, good activity programs, good pre-vocational (or vocational) programs, or competitive employment, a meaningful day program is important to foster
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growth, to enhance clients' self-image, and to provide appropriate means for spending time...
MEANINGFUL INVOLVEMENT WITH COMMUNITY ACTIVITIES is important. Much of the inappropriate behavior which occurs happens because of a lack of appropriate ways for clients to spend time- or to address quite normal needs. If there isn't something appropriate, interesting, or mean ingful to be involved with or to expend. ..energy on or to satisfy. . . curiosity, some persons may seek another way to stimulate or to entertain themselves or to expend their energy. . .
APPROPRIATE HOME PROVIDERS. . .The quality of the providers will deter mine the capacity of the comnunity to appropriately address the needs of all of its residents. . .
Providers need to be clearly geared toward client-specific needs. Staff assisting clients who are blind, deaf, non-ambulatory, not toilet trained, self-abusive, aggressive, etc. , will need special training and additional support. . . If caretaker preference is related to client success, then caretakers need to be developed who are desirous of and capable of addressing more intense client characteristics.
. . .For the community system to work, comnunity providers must also have a commitment that they are "going to make it work for all clients!"
EFFECTIVE INDIVIDUAL PROGRAM PLANS.. .To the extent that any setting aspires to be growth-enhancing rather than merely custodial or inci dentally developmental, it is-helpful to have (afid to assure some program accountability through) individualized methodologies with which to deal with prioritized client-specific needs. The more limited in adaptive abilities or more difficult the behaviors presented by a particular client, the more essential an Individual Program Plan is as a supportive guide for staff (and support service staff] in assuring that such clients can be absorbed into community systems. . .
Linked to the quality of the Individual Program Plans is the availability of the interdisciplinary team and/or consultant support staff to respond to a crisis or to a difficult situation which may arise in a community home.
RESPITE. One of the most critical factors which can impact on requests for new institutional admissions or returns is the ready availability of respite services. It has been stated that "temporary help at the right time" can prevent a situation from deteriorating to such a point that long-term care is sought out by natural families. Similarly, some form of relief or respite is extremely valuable in preventing some foster providers. . .or group home providers from "burning out''. . .
It has been estimated that six respite slots may prevent from 6-20 admissions or returns a year. Given these potential advantages, ef forts should be vigorously pursued to eliminate the financial and other disincentives that prevent ample development of respite care options.
Policy Analysis Paper #5
August 31, 1981
Page 19
INSTITUTIONAL PROGRAMS TO AID CLIENT TRANSITION INTO COMMUNITY PROGRAMS
There are a large number of activities which an institution ~arl engage___. ..-. i n to foster the event ua 1 ass i mi 1 at i on of c 1 i ents i n to CORNU n i ty pro grams and to reduce any potenti a 1 for transfer anx i et.y. Such acti v i ties include, but at-e not 1 imi ted to:
( 1 ) the holding of small grol,!] meetings of residents on campus where the same s i x-to-eight persons meet regularly to discuss common interests...
(2) a Life Book can be put together which consists of a cl ient's scrap book with photos aodi or pictures of the cl ient and his/her family, friends, and roolfiiil~.tes at various points in his/her life and at various places where he or she has lived. . which provides a sense of being part of a cent.inuurn. . .
(3) toi 1 eting programs are always good for c1 ier,ts to be irivolved with because staff are always more willing to assume respoi~sibilitj' fora client with toileting skills than one without.
(4) increasing exposure to the conrnunity with field trips and other commuIiitj I outin{;s makes the community appear more appealing and less foreign. . .
(5) L realistic and responsible placement review process is neces~~j.y 10 assure the appropriate match of clients to providers. clients tc~ ~om~~~ (or sites ), and cl ient.s to clients..,
(6) pre-pl acelnent vi ~i~:s to P~"oposed home PI acements and weekend visits can tle 1 p reduce c ~~( : t )'~s:~s of transition...
(7) involving ward roommates and instit. uti,?n:~ s~.aff in the actual moving of a client to a new home also aids in reducing traditional stress . . .and,
(8) [sending] institutional staff who [al'e~ close to clients. . . into the homes for a week or two to worl: wit~ the client and with the home's staff to !lelp orient each to the other . .
