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2000 15: 116Focus Autism Other Dev DisablRobert L. Schalock

Three Decades of Quality of Life  

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Three Decades of Quality of Life

Robert L. Schalock

Over the last few decades, the field of mental retardation has embraced the con-cept of quality of life as both a sensitizing notion and an overarching principle for ser-vice delivery. This article summarizes the current understanding of the quality of lifeconstruct by examining previous efforts at defining and clarifying the concept, andexamines issues that will affect the utility of the construct well into the new century.

From Mental Retardation in the 21st Century by M. L. Wehmeyer and J. R. Patton (Eds.), 2000, Austin, TX: PRO-ED. Copy-right 2000 by PRO-ED. Adapted with permission.

recently published a chapter (Scha-t lock, 1997a) in which I discussedM the concept of quality of life in 21 st-

century disability programs. In that chap-ter, I suggested that these programs

incorporate an ecological conception ofdisability, focus on quality of life, basetheir services on a supports model, and becommitted to evaluating person-referencedoutcomes. In the present article, I wantto discuss the concept of quality of life inthe 21st century from a slightly differentperspective. First, I summarize where wehave been (which I refer to as &dquo;embrac-ing the concept&dquo;); second, I discuss

where we are now ( &dquo;clarifying the con-cept&dquo;) ; third, I project where I think weare going with the concept in the 21stcentury (&dquo;pursuing the concept&dquo;); and,finally, I offer 10 guidelines to help inour efforts.

I suggest at the outset of our consid-eration of three decades of quality of lifethat the importance of the concept ofquality of life to persons with mental re-tardation is reflected well in the follow-

ing three statements:1. The concept of quality of life is a

social construct that is affecting pro-gram development and service deliveryin the areas of education (Halpern, 1993;

Snell & Vogtle, 1997), health care (Coul-ter, 1997; Renwick, Brown, & Nagler,1996), mental retardation (Brown,1997; Schalock, 1996b, 1997b), and

mental health (Lehman, Rachuba, &

Postrado, 1995 ).2. The concept of quality of life is

being used as the criterion for assessingthe effectiveness of services to peoplewith disabilities (Felce & Perry, 1996;Gardner, Nudler, & Chapman, 1997;Perry & Felce, 1995; Rapley & Hop-good, 1997; Schalock, 1995b).

3. The pursuit of quality is apparentat three levels of today’s human serviceprograms: in persons who desire a life of

quality (Ward & Keith, 1996; Whitney-Thomas, 1997), in providers who wantto deliver a quality product (Albin-Dean& Mank, 1997), and in evaluators (pol-icymakers, funders, and consumers) whowant quality outcomes (Gardner & Nud-

ler, 1997; Schalock, 1999).How did we get to where we are in ref-

erence to the concept of quality of life,and where are we going as we embark onthe 21st century? In the following threesections of this article, I suggest that wegot here by embracing during the decadeof the 1980s the concept of quality oflife; during the 1990s we attempted to

clarify the concept; and I predict thatduring the next decade the concept willbe pursued even more intensely by (a) in-dividuals advocating for a life of quality,(b) service and support providers focus-ing on ways to produce quality prod-ucts, and (c) evaluators analyzing qualityoutcomes.

Embracing the Concept(the 1980s)

During the 1980s the field of mental re-tardation and closely related disabilitiesembraced the concept of quality of life asboth a sensitizing notion and an over-arching principle for service delivery.Why? Because the concept captured thechanging vision of persons with disabili-ties, provided a common language forpersons across disciplines and functionalstatuses, and was consistent with the

larger &dquo;quality revolution.&dquo;

The Changing Vision

Over the last two decades, there has beena significant change in the way we viewpersons with disabilities. This trans-

formed vision of what constitutes the life

possibilities of persons with mental retar-dation is reflected in terms that are fa-

miliar to the reader: self-determination,strengths and capabilities, the importanceof normalized and typical environments,the provision of individualized support

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117

systems, equity, and enhanced adaptive be-havior. As a term and a concept, qualityof life became, during the 1980s, a socialconstruct that captured this changingvision and thus became the vehicle

through which consumer-referenced eq-uity, empowerment, and increased life

satisfaction could be achieved. It was alsoconsistent with the individualization and

person-centered focus that was rapidlyemerging in the field. The assumption ofmost people was that if adequate and ap-propriate supports were available, the

person’s quality of life would be signifi-cantly enhanced.

A Common Language

Anyone who was involved in the field ofmental retardation at the time remem-bers that during the 1980s the field wasexpanding and trying to adjust to themajor upheavals caused by normaliza-tion, deinstitutionalization, and main-streaming. As important as these move-ments were, they were more processoriented than outcome oriented and thusfailed to provide a clearly articulated goalfor the persons involved. The concept of

quality of life became attractive as a uni-versal principle that provided a commongoal across environments and people.Thus, &dquo;to enhance one’s quality of life&dquo;became our goal. This sensitizing notionwent beyond the processes of systemschange, to the outcomes of those pro-cesses. The desire for a life of quality wascharacteristic of everyone, and thus a

common language was born.A second aspect of a common lan-

guage was that the quality of life conceptfit the increasing need for accountabilityin rehabilitation programs. Programswere consistently being evaluated re-

garding their efficiency and effectiveness,and the notion that one’s quality of lifecould be enhanced became a mantra for

many who were looking for a way to eval-uate program outcomes across a vast

array of persons and services. Thus, the

quality of life concept became both acommon goal for all programs and a

common language for those concernedabout evaluating their outcomes (Scha-lock,1995b).

The Quality RevolutionThe quality revolution, with its emphasison quality products and quality out-

comes, was emerging rapidly during the1980s. One of the main products of thisrevolution was a new way of thinkingthat was guided largely in the mentalretardation field by the concept of qual-ity of life, which became the unifyingtheme around which programmaticchanges were organized. This new way ofthinking stressed person-centered plan-ning, the supports model, quality-enhancement techniques, and person-referenced quality outcomes (Schalock,1999). More specifically, this revolution-ary approach, based on the unifyingtheme of quality of life,

~ allowed service providers to reor-ganize resources around individualsrather than rearranging people inprogram slots (Albin-Dean & Mank,1997; Albrecht, 1993; Edgerton,1996; Gardner & Nudler, 1997;Schalock, 1994);

~ encouraged consumers and serviceproviders to embrace the supportsparadigm (Schalock, 1995a);

~ shifted the focus of program evalua-

tion to person-referenced outcomesthat could be used to improve orga-nizational efficiency and enhanceperson-referenced services and sup-ports (Clifford & Sherman, 1983;Mathison, 1991; Schalock, 1995b;Torres, 1992); and

~ allowed management styles to focuson learning organizations (Senge,1990), reengineered corporations(Hammer & Champy, 1993), entre-preneurship (Osborne & Gaebler,1992 ), and continuous quality im-provement (Albin-Dean & Mank,1997).

Thus, by the end of the 1980s, we hadembraced the concept of quality of lifefor at least the three reasons just men-tioned. However, embracing a conceptand fully understanding it are two differ-ent things. Before considering the de-cade of the 1990s, during which we madesignificant progress in understanding and

applying the concept, it is important tomention two additional phenomena re-garding the concept of quality of life thatwere evident by the end of the 1980s.These two phenomena became signifi-cant catalysts to the work that was to becarried out during the 1990s. First, theconcept of quality of life was being usedin at least three different ways:

~ as a sensitizing notion that was givingus a sense of reference and guidancefrom the individual’s perspective, fo-cusing on the person’s environment;

~ as a social construct whose overridingprinciple was to improve and enhancea person’s quality of life; and

~ as a unifying theme that provided asystematic or organizing frameworkto focus on the multidimensionalityof the concept.

Second, the field was beginning to agreeon a number of quality of life principles.These 11 principles, which are summa-rized in Table 1, were based on consid-erable discussion and input from allstakeholders ( Goode, 1990; Schalock,1990).

Clarifying the Concept(the 1990s)

During the 1980s the field of mental re-tardation embraced a concept that was

neither well defined (hence the presenceof more than 100 definitions of quality oflife) nor completely understood. Thus,the 1990s began with investigators andadvocates attempting to answer a num-ber of questions about the conceptual-ization and measurement of quality oflife (Raphael, 1996; Schalock, 1996b).Chief among these questions were thefollowing:

Conceptual issues-How is it best to

conceptualize indicators of quality of life?Is quality of life a single, unitary entity,or a multidimensional, interactive con-cept ? Is quality of life the same for all in-dividuals ?

Measurement issues-What should bemeasured? How do we measure qualityof life? What psychometric standards

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TABLE 1

Fundamental Quality of Life Principles (1980s Decade)

need to be considered? How do we over-come measurement challenges?As we begin this decade, these ques-

tions are beginning to be answered, thankslargely to a number of significant con-ceptual shifts regarding how we view andassess quality of life. In this section I dis-cuss five of these concepts: (a) the multi-dimensional nature of quality of life,(b) satisfaction as the primary measure ofquality of life, (c) the hierarchical natureof quality of life, (d) the use of mul-tivariate research designs to study im-portant correlates of quality of life, and(e) the use of multiple methods to assessone’s perceived quality of life.

Multidimensional Nature

There is increasing agreement that qual-ity of life is a multidimensional conceptthat precludes reducing it to a single&dquo;thing,&dquo; of which the person may have aconsiderable amount, some amount, or

none. Current and ongoing research inthis area has identified eight core qualityof life dimensions (Schalock, 1996c):emotional well-being, interpersonal rela-tionships, material well-being, personaldevelopment, physical well-being, self-

determination, social inclusion, and

rights. Although the number and config-uration of these core dimensions vary

slightly among investigators, the sum-

mary presented in Table 2 indicates quiteclearly the generality of these dimen-sions. These core dimensions are based

on the work of Cummins ( 1996, 1997a);Felce (1997); Felce and Perry (1996,1997b); Hughes and Hwang (1996);and Schalock (1996c). Similar listingscan be found in Heal, Khoju, Rusch, andHarnisch (in press); Parmenter and

Donelly (1997); Renwick and Brown(1996); and Stark and Goldsbury( 1990).

Focus on Satisfaction

Increasingly, we are seeing that a person’smeasured level of satisfaction is the most

commonly used dependent measure inevaluating his or her perceived quality oflife. One might well ask, &dquo;Why this em-phasis on satisfaction?&dquo; Actually, there

are a number of reasons, including thefollowing:

~ It is a commonly used aggregatemeasure of individual life domains

(Andrews, 1974).~ It demonstrates a traitlike stability

over time (Diener, 1984; Edgerton,1990, 1996; Heal, Borthwick-Duffy,& Saunders, 1996).

~ There is an extensive body of researchon level of satisfaction across popula-tions and service delivery recipients

(Cummins, 1997b; Halpern, 1993;Harner & Heal, 1993; Heal &

Chadsey-Rusch, 1985; Heal, Rubin,& Park, 1995; Schalock & Faulkner,1997).

. It allows one to assess the relative

importance of individual quality oflife dimensions and thereby assignvalue to the respective dimensions(Cummins, 1996; Felce & Perry,1996, 1997b; Flanagan, 1978, 1982;Schalock, Bontham, & Marchant,in press).

Thus, the major advantages of usingsatisfaction as an indicator of one’s per-ceived quality of life are its usefulness in(a) comparing population samples; (b) pro-viding a common language that can beshared by consumers, providers, policy-makers, regulators, and researchers;(c) assessing consumer needs; and (d) eval-uating organizational outputs. Its majordisadvantages include its limited utilityfor smaller group comparisons that

might provide only a global measure ofperceived well-being, and its discrepancywith current multidimensional theories

of quality of life (Cummins, 1996). Forthese reasons, other dependent measuresof quality of life are needed, and these aredescribed in a later section of this article.

Hierarchical Nature

There is good agreement in the qualityof life literature about three things: First,quality of life, by its very nature, is sub-jective ; second, the various core dimen-sions are valued by persons differently;and third, the value attached to each coredimension varies across one’s life. Thesethree points of agreement strongly indi-cate that the concept of quality of lifemust be viewed from a hierarchical per-spective. A model that allows one to in-tegrate these three factors is presented inFigure 1, which is based on the work ofElorriaga, Garcia, Martinez, and Unamun-zaga (in press); Flanagan (1978); Mas-low (1954); and Verdugo (in press). Themodel depicts a hypothetical, hierarchicalarrangement of the various core qualityof life dimensions listed in Table 2.

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TABLE 2

Core Quality of Life Dimensions (1990s Decade)

Multivariate Research Design

One of the biggest stumbling blocks over-come during the decade of the 1990s wasshifting our mind-set regarding the re-search and statistical design used to studythe quality of life concept. Specifically, wesaw a significant shift from a &dquo;between&dquo;

to a &dquo;multivariate/within&dquo; approach. His-torically, the study of quality of life wasapproached from a between-groups (or

between-conditions) perspective; hence,investigators sought to find factors, suchas social economic status and large demo-graphic population descriptors, that coulddiscriminate between those persons or

countries with a higher and those with alower quality of life. This &dquo;between&dquo;

mentality spilled over to our early workon quality of life in subtle ways, as re-flected in the attitude expressed by somethat we need to have different measures

FIGURE 1. Hierarchial nature of core quality of life dimensions.

or quality of life indices for those who arehigher functioning and for those who areeither nonverbal or lower functioning.

Shifting to a multivariate research de-sign has a number of heuristic and prac-tical advantages. First, it allows one to

focus on the correlates and predictors ofa life of quality, rather than comparingquality of life scores or statuses. Morespecifically, one can use multivariate re-search designs to determine the relation-ship between a number of measured pre-dictor variables and one’s perceivedquality of life. This approach has beenone that I have used to evaluate the rela-tive contribution to one’s assessed qual-ity of life of a number of personal char-acteristics, objective life conditions, andprovider characteristics. Across a numberof studies (e.g., Schalock, DeVries, &

Lebsack, 1999; Schalock & Faulkner,1997; Schalock, Lemanowicz, Conroy,& Feinstein, 1994), personal factors

(e.g., health status and adaptive behaviorlevel), environmental variables (e.g., per-ceived social support, current residence,earnings, home type, and integrated ac-tivities), and provider characteristics (e.g.,worker stress and job satisfaction) havebeen shown to be significant predictorsof quality of life. Second, once these sig-nificant predictors are identified, program-matic changes can be made to enhance aperson’s quality of life through tech-niques such as personal development andwellness training, quality enhancementtechniques, and quality management tech-niques (Schalock, 1994; Schalock &

Faulkner, 1997). Third, multivariate re-search designs help us better understandthe complexity of the concept of quality

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of life and the role that a number of con-textual variables play in the perception ofa life of quality. Finally, these designs shiftthe focus of our thinking and interven-tion from personal to environmental fac-tors as major sources of quality of life en-hancement.

Quality of Life AssessmentOne of the most significant changesduring the 1990s was the shift towardoutcome-based evaluation and person-referenced outcomes. This emergingfocus on person-referenced outcomes re-flects not only the subjective and per-sonal nature of one’s perceived quality oflife, but also the quality revolution thatwe are currently experiencing; consumerempowerment with the associated expec-tation that human service programs willresult in an improved quality of life forservice recipients; the increased need forprogram outcome data that evaluate the

effectiveness and efficiency of interven-tion and rehabilitation programs; the

supports paradigm, which is based on thepremise that acquiring needed and rele-vant supports will enhance one’s qualityof life; and the pragmatic evaluation par-adigm, which emphasizes a practical,problem-solving orientation to programevaluation.

The quality of life assessment approachdiscussed in this section of the article

is based on three assumptions made inthe current literature on quality of lifeconceptualization and measurement:

(1) Quality of life is composed of eightcore dimensions (see Table 2 and Fig-ure 1); (2) the focus of quality of life as-sessment should be on person-referencedoutcomes; and (3) assessment strategiesshould use either personal appraisal orfunctional assessment measures reflect-

ing one or more of the eight core di-mensions. A model that incorporatesthese three assumptions is presented inFigure 2. As shown in the model, each ofthe eight core dimensions is defined op-erationally in terms of a number of spe-cific indicators that include attitudinal,behavioral, or performance factors repre-senting one or more aspects of each coredimension. The following criteria should

guide one’s selection of specific indica-tors (Anastasi, 1982; Schalock, 1995b):The indicator is valued by the person,multiple indicators are used, the indica-tor is measurable and has demonstrated

reliability and validity, the indicator is

connected logically to the service or sup-port received, and the indicator is evalu-ated longitudinally. Exemplary quality oflife indicators are listed in Table 3.The indicators listed in Table 3 can be

measured using either the personal ap-praisal or the functional assessment strat-egies described next. The reader shouldalso note that the personal appraisal strat-egy should be equated to the historicalnotion of subjective indicators, whereasthe functional assessment strategy shouldbe equated to the historical notion of ob-jective indicators.

Personal Appraisal. The personalappraisal strategy addresses the subjectivenature of quality of life, typically askingthe person how satisfied he or she is withthe various aspects of his or her life. For

example, this is the approach we used inthe Quality of Life Questionnaire (Scha-lock & Keith, 1993), wherein we askedquestions such as, &dquo;How satisfied are youwith your current home or living situa-tion ?&dquo; and &dquo;How satisfied are you withthe skills and experience you have gainedor are gaining from your job?&dquo; Althoughthe person’s responses are subjective,they need to be measured in psychomet-rically acceptable ways. Thus, a 3- to

5-point Likert scale can be used to indi-cate the level of expressed satisfaction.The advantages to this approach to mea-surement are that it encompasses the

most common dependent measure usedcurrently in quality of life assessments, itallows one to measure those factors that

historically have been considered to bemajor subjective indicators of a life of

quality, and it allows one to quantify thelevel of expressed satisfaction.

Functional Assessment. The most

typical formats used in functional assess-ment include rating scales, participantobservation, and questionnaires (Schalock,1996c). Each attempts to document a

person’s functioning across one or morecore quality of life dimensions and the re-spective indicator. To accomplish this,most instruments employ some form ofan ordinal rating scale to yield a profile ofthe individual’s functioning. For exam-ple, one might ask, &dquo;How frequently doyou use health-care facilities?&dquo; or &dquo;How

many civic or community clubs do youbelong to?&dquo; The advantages of functionalassessments are that they are more ob-jective and performance based, allow forthe evaluation of outcomes across

groups, and thus provide important feed-back to service providers, funders, andregulators as to how they can change orimprove their services to enhance the re-cipients’ perceived quality of life.As mentioned previously, historically,

the subjective indicators used to assessone’s quality of life have been differentfrom the objective ones. The advantageof using the approach to quality of life as-sessment depicted in Figure 2 is that oneneed not use different indicators for sub-

jective versus objective measurement;

rather, the core dimensions remain con-stant, and what varies is whether one uses

a personal appraisal or a functional as-sessment approach to assessing the re-spective indicators. Thus, all assessmentis focused clearly on the eight core di-mensions of quality of life.

It is apparent that some of the do-mains are more amenable to personal ap-praisal, and others to functional assess-ment. For example, personal appraisalmight best be used for the core di-

mensions of emotional well-being, self-determination, rights, and interpersonalrelations, whereas functional assessmentmight better be used for the core dimen-sions of material well-being, personal de-velopment, physical well-being, and so-cial inclusion. Hence, there is a definiteneed to use multiple measures of one’sperceived quality of life.

Despite the conceptual breakthroughregarding the assessment of quality of lifejust described, to date no single instru-ment fully implements the assessmentmodel depicted in Figure 2. The inter-ested reader is referred to Cummins

(1997a) and Schalock (1996c) for re-views of the most commonly used in-

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FIGURE 2. Measurement of quality of life core dimensions.

struments and advancements in the area

of quality of life assessment.

Pursuing Quality(the Next Decade)

The discerning reader will have noticedthat quality of life has yet to be definedin this article. And that is by design, be-cause one needs to understand the con-

cept fully in order to define it. And thatmay well explain why one can find morethan 100 definitions of quality of life inthe literature today. Over the years I haveconsistently referred to quality of life as&dquo;a concept that reflects a person’s de-sired conditions of living&dquo; (Schalock,1994, p. 121). Given the five significantchanges that occurred during the 1990s,I am now ready to modify my definitionslightly:

Quality of life is a concept that reflectsa person’s desired conditions of living re-lated to eight core dimensions of one’s life:emotional well-being, interpersonal rela-

tionships) material well-being, personaldevelopment, physical well-being, self-determination, social inclusion, and rights.With this definition clearly in mind, I

suggest that the concept of quality of lifewill be pursued in the first decade of the21st century from the following threeperspectives: individuals pursuing a life ofquality, service and support providersproducing quality products, and evalua-tors (policymakers, funders, and con-sumers) analyzing quality outcomes.

Individuals Pursuing aLife of QualityI anticipate that there will be at least

three major thrusts by persons pursuinga life of quality. First, we will continue tosee strong advocacy for increased oppor-tunities to participate in the mainstreamof life, associated with increased inclu-sion, equity, and choices. Related effortswill involve advocating for increased

individual supports within regular envi-ronments ; seeking inclusion in major ac-

tivities such as decision making, person-centered planning, and participatory ac-tion research (Whitney-Thomas, 1997);and incorporating the concept of qualityof life into international and national dis-

ability policies (Goode, 1997a, 1997b).With these increased opportunities andinvolvement, more positive personal ap-praisals and functional assessments-thatis, an enhanced quality of life-shouldresult.

Second, consumers will work jointlywith researchers in assessing the relativeimportance of the core dimensions

depicted in Figure 1. Referring to Fig-ure 1, for children and youth, for exam-ple, the most important dimensions

may well be personal development, self-determination, interpersonal relation-

ships, and social inclusion (Schalock,1996a; Stark & Goldsbury, 1990); foradults, the hierarchy as shown in Fig-ure 1 may well reflect the ordering ofmany peoples’ valued dimensions; andfor the elderly, physical well-being, inter-personal relationships, and emotional well-

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TABLE 3

Quality of Life Indicators

being may be the most important di-mensions (Schalock et al., 1999). Thenet result of these efforts should be the

development of relevant quality of lifeoutcome categories across the life span.Third, consumers will increasingly be-come involved in assessing their own

quality of life. For example, we (Schalocket al., in press) have recently shown thatconsumers are excellent surveyors andcan assess other consumers’ quality of lifewith highly acceptable reliability and

validity.

Service ProvidersProducing Quality ProductsThis first decade of the 21 st century willsee service providers implementing quality-enhancement techniques that focus onwhat program personnel and services orsupports can do to enhance a person’s

perceived quality of life. As we move intothe 21st century, I predict that thesetechniques will be either environmentallyor program based.

Environmentally Based Enhance-

ment Techniques. The implementa-tion of two concepts related to environ-

mentally based quality-enhancementtechniques will characterize the first

decade of the 21st century. One is thebelief that an enhanced quality of life isthe result of a good match between aperson’s wants and needs and his or herfulfillment (Cummins, 1996; Michalos,1985; Murrell & Norris, 1983; Schalock,Keith, Hoffman, & Karan, 1989); thesecond is the corollary that it is possibleto assess the match between persons and

their environments (Schalock & Jensen,1986). The importance of these twoconcepts is supported by data suggesting

that reducing particular discrepancies be-tween a person and his or her environ-ment increases that person’s quality oflife (Schalock et al., 1989).

Page constraints limit a thorough dis-cussion of these environmentally basedenhancement techniques. However, thefollowing two examples will indicate howtwo such techniques might be used in the21st century. One technique involves theassessment of particular environmentalcharacteristics as reflected in the ProgramAnalysis of Service System (PASS 3; Felce& Perry, 1997a; Wolfensberger & Glenn,1975) and allows one to evaluate the fol-lowing aspects of rehabilitation-orientedenvironments: physical integration, socialintegration, age-appropriate interpreta-tions and structures, culture-appropriateinterpretations and structures, model co-herency, developmental growth orienta-tion, and quality of setting. The secondtechnique involves the design of envi-ronments that are user friendly and evi-dence the following (Ferguson, 1997):opportunity for involvement (e.g., foodpreparation); easy access to the outdoorenvironment; modifications to stairs,water taps, and door knobs; safety (e.g.,handrails, safety glass, nonslip walkingsurfaces); convenience (e.g., orientationaids such as color coding or universal pic-tographs) ; accessibility; sensory stimula-tion (windows, less formal furniture);prosthetics (personal computers, special-ized assistive devices, high-technologyenvironments); and opportunity for

choice and control (e.g., lights, temper-ature, privacy, personal space, personalterritory).

Program-Based Enhancement Tech-niques. Once the core dimensions ofquality of life have been assessed, then itbecomes possible to implement a numberof program-based quality-enhancementtechniques. Examples include the follow-ing :

~ Emotional well-being-increasedsafety, stable and predictable environ-ments, positive feedback

~ Interpersonal relations-friendshipsand intimacy are fostered, familiessupported

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~ Material well-being-ownership, pos-sessions, employment

~ Personal development-educationand functional rehabilitation, aug-mentative technology

~ Physical well-being-health care,mobility, wellness, nutrition

~ Self determination-choices, personalcontrol, decisions, personal goals

~ Social inclusion-community role,community integration, volunteerism

~ Rights-privacy, voting, due process,civic responsibilities

In addition to pursuing these quality-enhancement techniques, service provid-ers will need to evaluate the impact ofthese strategies. Thus, during the first de-cade of the 21 st century, service providerswill need also to pursue the quality out-comes discussed in the next section. In this

process, they will need to evaluate wherethey are, where they want to be, and whatorganizational changes will be requiredto increase both person-referenced andprogram-referenced outcomes.

Evaluators AnalyzingQuality OutcomesHuman service organizations through-out the world are currently being chal-lenged to provide quality services thatresult in quality outcomes. This is a chal-lenging task because of two powerful,potentially conflicting forces: person-centered values and economically basedrestructured services. The focus on person-centered values stems from the quality oflife movement; the human rights andself-advocacy movements’ emphasis onequity, inclusion, empowerment, respect,and community living and work options;numerous public laws that stress oppor-tunities and desired person-referencedoutcomes related to independence, pro-ductivity, community integration, andsatisfaction; and research demonstratingthat persons can be more independent,productive, community integrated, andsatisfied when quality of life concepts arethe basis of individual services and

supports. Conversely, the focus on re-structured services stems from economic

restraints, an increased need for account-

ability, and the movement toward a mar-ket economy in health care and rehabili-

tation services.

How can service providers adapt tothese two potentially conflicting forcesand still focus on valued, person-referenced outcomes? A heuristic modelfor doing so is presented in Figure 3,which outlines the three components ofan outcomes-focused evaluation model:

standards, focus, and critical perfor-mance indicators. Standards reflect the

current emphasis on efficiency and value.Efficiency standards are based on theeconomic principles involved in increas-ing the net value of goods and servicesavailable to society; value standards re-flect what is considered good, important,or of value to the person. Focus repre-sents the current accountability emphasison programmatic outputs and person-referenced outcomes. In the model, out-puts reflect the results of organizationalprocesses, and outcomes represent the

impact of services and supports on theperson. Critical performance indicatorsfor the organization (&dquo;outputs&dquo;) includeresponsiveness, consumer satisfaction,quality improvements, staff competen-cies, normalized environments, user-

friendly environments, placement rates,unit costs, recidivism, bed days, and wait-ing lists; for the person (&dquo;outcomes&dquo;),critical performance indicators includeactivities of daily living, self-direction,functional skills, community living andemployment status, home ownership,decision making, self-esteem, social rela-tions, education, health, and wellness.The reader may ask a very basic ques-

tion at this point: &dquo;How might this

model be used to analyze quality out-comes within the current environment

that stresses person-referenced outcomesand program-referenced efficiency mea-sures ?&dquo; I would suggest the use of one ormore of the following types of outcome-based evaluation analyses (described inmore detail elsewhere: Schalock, 1995b;Schalock, 1999). Each analysis summa-rized below is related to a respective cellin the model shown in Figure 3.

. Efficiency outputs can be determinedby using either allocation efficiency

analysis or benefit-cost analysis thatevaluates whether the program usedits allocation well, whether the pro-gram’s benefits outweigh the costs,or both.

~ Efficiency outcomes can be deter-mined through impact analysis thatdetermines whether the programmade a difference compared to eitherno program or an alternative pro-

gram.~ Value outputs can be determined

through effectiveness analysis thatdetermines whether the service or

support in question meets its statedgoals and objectives.

~ Value outcomes can be determined

through participant analysis such asthat described in reference to the

quality of life assessment modelpresented in Figure 2.

The primary challenge to service

providers and evaluators alike is to reacha balance in their evaluation efforts

among the four types of analyses sum-marized above, and to recognize that dif-ferent constituents will emphasize theirrespective desired analysis. Funders, forexample, will most likely focus on effi-ciency outputs, whereas advocacy groupswill stress the importance of evaluatingvalue and efficiency outcomes. Thoseemphasizing public policy might stressefficiency outcomes and value outputs. Asecond challenge for each of us will be toreach a reasonable balance between ac-

countability demands and available eval-uative resources so that we can use the

resulting outcome data to do the follow-ing : (a) determine whether functionallimitations have been reduced and the

person’s adaptive behavior and role sta-tus enhanced; (b) provide feedback todecision makers about the effectivenessand efficiency of the respective servicesor supports provided; (c) provide thebasis for program changes and improve-ments ; (d) target those areas where in-creased resources can be applied to im-prove the match between persons and

environments; and (e) show consumersthat we are serious about program evalu-ation and that we are willing to involvethem in the evaluation activities.

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FIGURE 3. Outcome-focused evaluation model.

21 st Century Guidelines

As we embark on the 21st century and

undoubtedly continue to pursue both

the concept of quality of life and an en-hanced life of quality for persons withmental retardation, what guidelines mightassist our efforts? I propose 10 guidelinesthat need to be understood within the

context of the three decades of quality oflife just discussed. As a quick summary ofthose decades, remember that during the1980s we embraced the concept of qual-ity of life as a sensitizing notion, socialconstruct, and unifying theme; duringthe 1990s we came to a better under-

standing of the conceptualization andmeasurement of quality of life; and dur-ing the first decade of the 2lst century, Ipredict, we will see individuals pursuinga life of quality, service providers pro-

ducing quality products, and evaluatorsanalyzing quality outcomes. Thus, in ad-dition to reaffirming the 10 fundamentalquality of life principles summarized inTable 1, I offer the 10 guidelines sum-marized in Table 4 for our work duringthe ensuing decade.

In conclusion, the first decade of the21st century will be an exciting and ac-tive time as we jointly &dquo;pursue quality.&dquo;This pursuit will involve individuals’ de-siring and advocating for a life of quality,service and support providers’ producingquality products, and evaluators’ analyz-ing quality outcomes. However, despitethe optimism expressed in the above pre-dictions and guidelines, we should neverforget that the first decade of the 21stcentury will probably continue to re-

flect the value clashes that we experi-enced during the 1990s. Thus, consider-

able hard work, advocacy, and risk lie

ahead.

The last two decades saw considerable

progress in understanding the significantrole that the concept of quality of life hasplayed in the lives of persons with men-tal retardation and the systems that in-teract with those lives. Indeed, the con-cept of quality of life has extended

beyond the person and now affects anentire service delivery system because ofits power as a social construct, unifyingnotion, and integrating concept. But

what about the third decade? Will the

concept of quality of life be the same asit is today? Only time will tell. What

is certain is that, because of this con-

cept, the lives and hopes of people withmental retardation will never be the

same. And that is a lot to ask of any

concept.

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TABLE 4

21st Century Quality of Life Guidelines

ABOUT THE AUTHOR

Robert L. Schlalock, PhD, is a professor of psy-chology at Hastings College and adjunct pro-fessor of pediatrics and psychiatry at the Uni-versity of Nebraska Medical Center. His currentinterests are in the areas of planning and eval-uation, focusing on the topical areas of qualityof life and outcomes-based evaluation. Address:Robert L. Schlalock, Box 285, Chewelah, WA99109-0285.

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