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Lakin, Charlie, Ed.; And OthersQuality Assurance [for Persons with DevelopmentalDisabilities].Minnesota Univ., Minneapolis. Inst. on CommunityIntegration.; Minnesota Univ., Minneapolis. Researchand Training Center on Residential Services andCommunity Living.Administration on Developmental Disabilities (DHHS),Washington, D.C.; National Inst. on Disability andRehabilitation Research (ED/OSERS), Washington,DC.

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90DD0180; H133B8004826p.Institute on Community Integration, 109 Pattee Hall,150 Pillsbury Drive S.E., University of Minnesota,Minneapolis, MN 55455.Collected Works Serials (022)IMPACT; v6 n2 Sum 1993

MF01/PCO2 Plus Postage.Advocacy; Community Programs; *DevelopmentalDisabilities; Evaluation Methods; Group Homes;Personal Autonomy; Program Evaluation; *QualityControl; *Services; Social Integration; StatePrograms

IDENTIFIERS *Quality Assurance

ABSTRACTThis newsletter feature issue focuses on quality

assurance and innovative efforts to enhance ser-ice quality forpersons with developmental disabilities. Individual articles include:"Redesigning Quality Assurance" (Clarence J. Sundram); "QualityAssurance, Quality Enhancement" (Charlie Lakin et al.); "ChallengingTradition: Measuring Quality by Outcomes" (James Gardner);"Reinventing Quality" (Gary Smith); "CSLA (Community Supported LivingArrangements) and Quality of Life: Balancing Inclusion, Choice, andProtection" (Michael W. Smull); "Quality in Community Residences:Subcommittee Report" (Robert Gettings); "Quality Enhancement: ACommitment in Pennsylvania" (Nancy Thaler); "Quality Assurance forQuality of Life in Utah" (Georgia Baddley); "Continuous QualityImprovement in Oregon" (Darla Wilson et al.); "A Reorientation toQuality Assurance in New York" (Thomas Cuite); "Service Enhancementthrough Self Examination in Connecticut" (Joseph Harrison-Becker andDennis Mitchell); "Performance Contracting for Service Quality inMinnesota" (Robert Meyer); "Consumer Monitoring of Services inOklahoma" (Dennis Bean and John Gajda); "Gathering Quality RelevantData in Colorado" (Judy Ruth and Lynne Struxness); "Quality throughDirect Service Training in Kansas" (Kathleen Olson); "ImprovingQuality through Parent and Self Advocate Training" (Colleen Wieck andThomas J. Zirpoli); "Parent Cas, Management Training PromotesQuality" (Marijo McBride); and "Action Learning for QualityImprovement" (John O'Brien and Connie Lyle O'Brien). Eleven resourcesare also listed. (DB)

Feature Issue on Quality AssuranceIMPACT

Volume 6 (2) Summer 1993

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oimurnaver OF EDUCATIONOfficio o Educatonai Rematch on noronationtEDUCATIONAL RESOURCES

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Institute on Community IntegrationCollege of EducationUniversity of Minnesota

BEST COPY AVAILABLE

INSTITUTE ONCOMMUNITY INTEGRATIONCOLLEGE OF EDUCATION

UNIVERSITY OF MINNESOTA

Feature Issue on Quality Assurance Volume 6 (2) Summer 1993

For Stacy Lockwood and her mother Audrey, as for millions of Americans, qualityassurance in community services for persons with developmental disabilitiesmeans receiving the supports that make community integration possible.

Redesigning Quality Assuranceby Clarenc, J. Sundram

The publ kation of I- avid Osborne's book, Reinventing Government, hasspawned a renewed interest in changing the way in which governmental functionsare carried out. It has given rise to new initiatives in Washington and in manystates to "reinvent the Pentagon" or to "reinvent the Department of MotorVehicles." This movement towards "reinvention" comes on the heels of an earlierfascination with Total Quality Management (TQM) that placed renewed emphasison satisfying customers' expectations. These two waves of change have hit thefield of developmental disabilities at a time when it is particularly open to change.The waning role of institutions, and the growing experimentation with a variety ofcommunity alternatives under Medicaid Home and Community-Based ServicesWaivers and other federal and state programs, have prompted policymakers torethink the manner in which government assists in meeting the needs of peoplewith developmental disabilities.

In thinking about redesigning quality assurance in services to persons withdevelopmental disabilities, it is clear to me that one cannot redesignquality assurance without redesigning the service system as well. Thus,the task must start with ensuring that the service systein itself is built ona firm foundation that promotes quality. Quality begins with explicitlyand honestly articulating the values that undergird the system, andmaintaining simple, clear and consistent expectations for performance.

Redesign, continued on page 22

From the Editors

As persons with developmentaldisabilities move from institutional tocommunity living, day centers tointegrated work environments, socialisolation to valued participation, andtotal dependence to greater autonomy,new approaches to assure and enhanceservice quality are required. In manystates, innovative efforts already haveresulted in services that are moreresponsive to the needs and prefereacesof those they serve.

As innovative quality assuranceand enhancement programs evolve,certain common elements emerge: aculture of quality rather than simpleregulatory compliance; consumer-centered and value-driven services;decentralized authority and responsibil-ity; multi-stakeholder monitoring;technical assistance before sanctions;and measures of consumers' quality oflife rather than providers' quality ofeffort. Ongoing quality enhancement is,by definition, sustainable. Universalattention to quality of services is notinsensitive to resource limitations.Finally, ongoing quality programs haveconstituencies; they not only do good,they are known to do good.

This issue of IMPA CT offers theperspectives of leaders of innovativeefforts to assure and enhance servicequality for persons with developmentaldisabilities. We hope that their ideasand work will inspire and guide othersin redefining quality in their own work.

CONTENTS

National PerspectiveState EffortsTraining for QualityResources

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A publication of the Research and Training Center on Residential Services and Community Living and the Institute on CommunityIntegration (UAP). College of Education, University of Minnesota. Dedicated to improving community services and social supports for

persons with disabilities and their families.

2 National Perspective

Quality Assurance, Quality Enhancementby Charlie Lakin, Bob Prouty, and Gary Smith

The evolution of our society's response to persons withdevelopmental disabilities over the past quarter century hasbeen driven primarily by the images of dismal conditions inlarge institutional settings. Those images were createdthrough the vivid written, spokeil, and visual essays oninstitutions by scholars like Burton Blatt, politicians likeRobert Kennedy. and media figures like Geraldo Rivera.With institutional life as the referent, this response hasbrought steady movement of people from the social depriva-tion of institutions fo. what was assumed to be a vastlyimproved life "in the community." For example, nationwidethe average daily populations of state institutions decreasedfrom 194,650 people in 1967 to 80,270 people in 1991.Since 1989 there have been more people living in "commu-nity" residential settings (places with 15 or fewer residents)than living in institutions with 16 or more people. Nation-ally, "residentill services" have joined educational, voca-tional, family, and other services in what is primarily acommunity system.

That most persons with developmental disabilities nowlive in community settings is more than just an importantaccomplishment in the movement to assure their place incommunities. It has also served as a clarion call to attend innew ways and with greater care to the products of thatmovement. Recent research has suggested that physicalpresence alone cannot be equated with meaningful participa-tion and membership in the community. Increasingly peopleare looking for approaches for identifying and responding tothe needs of people that substantially improve the quality oftheir lives, membership in their communities, ability tocontrol their own lives, and other implied and desiredoutcomes of community living. But, they want theseoutcomes while still responding appropriately to the differ-ing types and riegrees of vulnerability among people withdevelopmental disabilities. People are also looking forways to monitor, evaluate, and enhance efforts. This work isbeing undertaken with a growing sense of urgency.

Several factors contribute to the crisis in confidence inthe predominant, existing methods of "quality assurance"and the need to find new ways of defining, monitoring, andenhancing service quality. One is the challenge of thevastness and rapid growth in comma:iity services. Servicesystems haw: become extremely dispersed, increasing thechallenges facing government quality assurance monitoringefforts. In the area of residential services in 1977, there were11,025 separate households in which persons with develop-mental disabilities received out-of-family residentialservices. By 1991, that number had exploded to over46.000 separate settings in which people received residentialservices. This growth will continue, and in light of

budgetary problems facing most states, few can be expectedto grow their quality assurance systems at anywhere near therate that service settings will grow. To be viable, qualityassessment and enhancement systems must become moreefficient. They must reduce standards to the essential,eliminate redundancy, and effectively use resources beyondthose available within traditional monitoring agencies.

A second factor is the ineffectiveness of traditional"quality assurance" approaches. Current "quality assurance"approaches, which are based on collections of hundreds ofdetailed standards applied uniformly in every settingmonitored, are not producing desired results. Clearly thecurrent approach in "assuring" quality lacks efficacy. Overthree-quarters of the federal court rulings and settlementsrelated to constitutionally inadequate institutional care in thepast 15 years have involved facilities with ICF-MR certifi-cations, an extremely regulated program. The currentapproach also lacks reliability. Given the same setting,different monitors cite different deficiencies. Finally, thecurrent approach lacks validity. One often cannot distin-guish, in quality of life measures, between residents ofgroup homes that are ICF-MR certified and those that arenot. While the standards in quality assurance processesassociated with the 1CF-MR program are intended to causedozens of good outcomes (safety, comfort, freedom fromexploitation, opportunities to learn, therapies as needed.good diet, etc.), as written and implemented they mayunduly emphasize paperwork, environment, and health andsafety at the expense of other quality of life measures.

A third factor is the recognition that quality is differentin different settings and for different people. There is greatdiversity in what different types of services are trying toaccomplish generally and in what specific plans are trying toaccomplish for different individuals. Standards to deter-mine whether there is adequate quality in services deliveredin different settings and even to different people within thesame setting must be sensitive to this challenging butfundamental reality. The rapid growth in Medicaid Homeand Community-Based Services for persons with develop-mental disabilities (from 0 in Fiscal Year 1981 to a pro-jected 98,000 in Fiscal Year 1993). the new (1991) Medi-caid Community Supported Living Arrangement services,and other individualized, services-based rather than facility-based programs, reflect a growing acceptance of theproposition that quality in services is as much or moredetermined by the extent to wl-iiLh the nature, amount, andtiming of service accommodates the individual's specificneeds and life circumstances as it is by any inherent"quality".

The fourth factor is the increasing focus or quality of

National Perspective 3

life for persons with developmental disabilities. Vii ually alldefinitions of quality of life recognize that there is no singlestandard, but that each individual's needs, interests, andpreferences play a major role in any individual's definition ofquality of life. This reality, recognized in formal research onquality of life, has had little place in the past efforts atdefining and monitoring quality of services for persons withdevelopmental disabilities. Past "quality assurance" effortshave focused on physical, staffing or programs standards thatwould seldom be included in any individual's definition ofimportant aspects of quality of life. For example, quality inhuman services is increasingly viewed not as a status to beassessed and certified, but as a process in which a personwith disabilities, service provider(s), family, friends, andothers articulate life goals, establish a plan for reaching thosegoals, and work effectively toward those goals. Quality isthereby manifested in the achievement of desired outcomes.

Yet another factor is the sense that quality assurance andmonitoring should contribute to improved services. A recentreport of the U.S. General Accounting Office (1990) focus-ing on quality assurance in health care contained an observa-tion that is highly relevant to services for persons withuevelopmental disabilities:

Quality assurance systems typically concentrate on qualityassessment and the identification of the relatively smallnumber of providers whose care is obviously unacceptable.They do comparatively little in attempting to directlyimprove the overall levels of quality provided by themajority of health professionals....If we think of perfor-mance of health care providers in terms of the bell-shapedcurve of a normal distribution, the challenge is to devise aquality assurance strategy that not only deals appropriatelywith the outliers but also assists in moving the entiredistribution to a higher level of quality.

Service delivery enhancement activities are thoseactivities provided to improve the quality of delivery of theservices rect.ived by persons with developmental disabilitiesbeyond the minimum levels assured by current regulatorypractices. Quality assessment systems and the enhancementsystems linked to them must focus on and have access to thevariables and resources that can actually improve quality.Quality assessment and enhancement efforts must beformative as well as summative in focus.

An additional factor is recognition th it people withdevelopmental disabilities are vulnerable to abuse andneglect in the community. There is a substantial challenge inrecognizing that with personalization of services, supports,training, and opportunities for individuals comes the chal-lenge of personalizing quality assessment and enhancementactivities. Replacing current approaches to "quality assur-ance" must not be done flippaatly. Persons with develop-mental disabilities are vulnerable to neglect, exploitation, andabuse. The documented record of actual abuse and neglect isclear; it happens within the current quality assurance efforts

5

and it can happen or even increase under alternative ap-proaches. Therefore, when improving approaches to qualityassessment and enhancement, in addition to addressing themore personalized aspects of quality of life, basic health ar:lsafety standards must be established. These must assure thatwhen the individual is not independently self sufficient thatappropriate steps have been taken to protect the individualand/or to guarantee actual delivery of needed supports,services, training, and/or opportunities.

A final factor is the growing recognition that quality isbest measured in "outcomes," not "structures" or "processes."Writing about quality in medical care 25 years ago,Donabedian (1966) developed a three-dimensional frame-work for the assessment of quality that included: 1) structure,2) process, and 3) outcome. In his model. structure includesadministrative and related processes that support and directthe provision of care. Thes inputs are largely administrativecreations of the program or ; zencies providing oversight.Process includes information gathered and recorded relatedto assessment of skills and needs, services provided andimplemented, unique individual occurrences including crisesand staff responses to crises, medical needs and servicesreceived, staff training, interagency ,neetings regarding theindividual, and so forth. Outcomes include measurableeffect:: of che services received or needed. In services forpersons with developmental disabilities these outcomesmictht be found in areas such as personal developmentalobjectives achieved, social skills practiced, social relation-ships maintained, types and frequency of communityparticipation, improved employment and earnings, increasedself-determination and choice, consumer and family satisfac-tion, and reduced costs for benefits.

Increasing numbers of people are recognizing, asDonabedian recognized a quarter century ago, that quality ofservices is ultimately found in their outcomes, not in thestructure and process variables of presumed value. There isurgency in moving to outcome-based assessment andenhancement of quality, and yet caution about people'svulnerabilities must govern our trials of new approaches.We must share ideas and concerns and provide opportunitiesto learn from each other.

Charlie Lakin is Director of the Research and TrainingCenter on F esidential Services and Community Lit ing,University qf Minnesota, and Bob Prouty is on the staff of thecenter. Gary Smith is Director of Special Proje..ts with theNational Association of State Directors of DevelopmentalDisabilities Services, Inc., Alexandria, Virginia.

References:

General Accounting Office (1990). Ouality assurance: Acomprehensive nationgl strategy for health care is needed(GAO/PEMD-90-14BR). Gaithersburg, MD: author.

Donabedian, A. (1966). Evaluating the quality of medical care.Milbank Memorial Fund Quarterly, 44, 166-206.

4 National Pospective

Challenging Tradition:Measuring Quality by Outcomes

by James Gardner

With the publication of the new Outcome BasedPerformance Measures, The Accreditation Council signals anew focus and offers a new challenge to the traditionalapproach to quality assurance. The Outcome Based Perfor-mance Measures reflect a dramatic shift in the definition andapproach to quality in services for people with disabilities.The measures consist of priority outcomes that people withdisabilities indicate are most important to them, and include30 specific items such as individual choice, dignity, respect.social inclusion, security, personal relationships, rights.

The focus on outcomes brings the personinto the quality improvement process.

insurance, and satisfaction. These outcomes for peopletranscend particular programs and services. Outcomemeasures contain no reference to work, vocational training,particular residential setting, leisure activity, clinical setting,or other program specific language. They are generic andapply to all supports and services provided to people withdisabilities.

This fundamental change began in 1990 when TheAccreditation Council shifted from a traditional focus onquolity assurance through accreditation to one that empha-sizes the enhancement of quality. The Council expanded itsmi:,sion to include working with agencies to improve the,uality of supports and services to people with disabilities

instead of keeping activities limited to service evaluation.The new mission of The Council is that of a "national qualityimprovement organization." This change in the mission ofThe Council and the content of its standards reflects changesin th c. field c f disability. During the past quarter century ourknowledge base has increased, our practice has become morepromising. and we have gained greater experience workingin partnersnip with people who experience disabilities.

During this time, the relative emphasis placed on thetraditional input, process. and outcome indicators haschanged. The early focus on input and process measuresoccurred because the field was not certain of the outcomesthat could be exOected or that those outcomes could even bemeasured. In the absence of clearly defined outcomes,standards and regulations stressed organizational inputs andprocess. The following categories identify the traditionalquality assurance indicators:

Input measures that focus attention on resources such asphysical environment, financial support, people and

technology that are put into a program. Standards thatfocus on square footage of living space in a bedroom, theper diem rate, or the number of full time staff are con-cerned with inputs.

Process measures that focus on how the inputs are usedand arranged, and that describe how the organizationoperates. Standards that specify team member interactionor describe how planning decisions are recorded, re-ported, and reviewed are process oriented.

Program Outcomes measures that describe the end result,not the resources or the means to accomplish the end.Program outcomes target service goals, such as thenumber of work placements.

Outcomes for people, however, describe the outcomesthat make the greatest difference to people receiving theservice or support. The Council views quality not ascompliance with program requirements, but rather as

This new emphasis on outcomes for theindividual, rather than organizational

process, challenges traditional approachesto quality assurance.

responsiveness to individual outcomes. In the past, inputand process standards became ends in themselves. Inputand process indicators were developed for specific pro-grams. As a result, residential, vocational, social, andeducational standards evolved around programs. Qualitywas defined as the extent of the program's compliance withits assigned input and process measures. Standards forparticular programs were not connected to the people in theprograms. In refocusing on outcomes for people, TheAccreditation Council is not abandoning important input orprocess requirements. Organizations need qualified staff,along with policies and procedures. However. The Councilmaintains that outcomes for people are more important thatinput or process standards.

Three major factors motivated The Council to questionits own traditional approach to quality. First, board mem-bers and staff recognized that there was an unfortunate anddisturbing outcome of the program approach to services.Quality efforts that emphasized process in programs resultedin the development of uniform programs being offered toserve many unique and different people. People were often

6

National Perspective 5

pigeon-holed in the best available program "slot" andservices focused on supporting the person to succeed withinthe chosen environment. As an alternative to programthinking, some providers began to offer individualizedservices and supports to people instead of placement inprograms. The transition from a focus on "programs" to afocus on people was the seed of a new definition of qualitythat identifies outcomes for people as the primary variables,instead of conformance with program or professional criteria.

The recognition of people with disabilities as theprimary stakeholders in the service process was the secondcritical factor motivating change. This new focus onindividuals decreased the relative importance of input andprocess measures and increased the attention to outcomes forpeople. The identification of the person as the key stake-holder also solved the question of what to measure. Peoplewith disabilities identified what they expected from theirservice and supports. Outcomes for people demanded ahigher priority than employing the proper process or the right

combination of inputs.Finally, this change in human services was reinforced

by the growing evidence from the general service economythat services of quality attend and respond to the need of thecustomer. In fact, the customer's needs and opinions are notonly sought, but they are also highly valued. Indeed, qualitycan be defined as the extent to which a service meets orexceeds the customer's expectations.

This new emphasis on outcomes for the individualrather than organizational process challenges traditionalapproaches to quality assurance. "Responsiveness to theperson" will provide greater urgency and clarity of purposethan conformity and compliance. The focus on outcomesbrings the person with disabilities into the quality improve-ment process.

Jim Gardner is Executive Director of The AccreditationCouncil on Services for Persons with Disabilities, Landover,Maryland.

Reinventing Qualityby Garr Smith

Over the past decade there has been enormous changein the topology of publicly-funded services and supportsfor people with developmental disabilities. Ten years ago,most people who received residential supports lived inlarge, typically state-operated congregate care facilities.Today, the majority are supported in small communityliving arrangements, and many participate in communityemployment and recreation options, and family life.

The past decade also has seen a fundamental shift inthe service paradigm. The rigid "continuum of care" isgiving way to the "supports paradigm." We are movingaway from "care and treatment" program models andspecialized facilities, to systems that are propelled bypersonalized support strategies embracing communitymembership, personal choice, 1: tegration, interdepen-dence, and diversity.

Against this backdrop of system reconfiguration andredefinition, there is growing recognition that how wepromote high quality services also must change. Thediversification, decentralization, and sheer growth ofcommunity service systems call into question the viabilityof quality assurance systems that principally rely ontraditional methods. For example, formal survey andinspection processes cannot keep pace with the growth inservice settings. Moreover, as supports are increasinglyfurnished outside the confines of specialized facilities.yesterday's standards of best practice are malaligned with

the new paradigm. Additionally, prescriptive regulationsstand in the way of personalizing support strategies. Theinterplay of personal choice, natural support networks, andregular community living enormously alters the frame-work within which we judge the quality and effectivenessof community services.

Solving the "quality equation" poses enormouschallenges. These challenges will not be met by simplyhiring more inspectors or promulgating additional regula-tions to surround commanity services with formalizedquality assurance systems. Approaches are needed thatrecognize that quality is not a status to be assessed andcertified, but a process in which a person with disabilities,service provider(s), family, friends and others articulatelife goals, establish a place for reaching those goals, andwork effectively toward them. Quality must be measuredin terms of whether service systems are achieving valuedoutcomes in areas such as personal development, commu-nity participation, self determination, economic indepen-dence, consumer and family satisfaction, and improvedefficiency. We are reinventing how we support peoplewith developmental disabilities: it is time to reinvent howwe judge the results of those supports.

Gary Smith is Director of Special Projects with theNational Association of State Directors of DevelopmentalDisabilitie.s Services, Inc., Alexandria, Virginia.

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6 National Perspective

CSLA and Quality of Life: Balancing Inclusion,Choice, and Protection

by Michael W. Small

In 1990, Congress granted authority for eight states toprovide community supported livirm arrangements toMedicaid eligible citizens with cognitive and/or physicaldisabilities. The congressional action that created Commu-nity Supported Living Arrangements (CSLA) reflected thetension between the desire to promote choice and the needto protect vulnerable individuals. This was carried into therequest for state proposals to participate, which included theexplicit requirement that the state, "show how it intends tobalance between recipient choice and the state's responsibil-ity to protect the health and welfare of the recipients."Regardless of the severity of the disability, people withdevelopmental disabilities are more vulnerable and deserve

The congressional action that createdCommunity Supported Living Arrange-ments reflected the tension between thedesire to promote choice and the need to

protect vulnerable individuals.

protections that exceed those accorded to other citizens.Reasonable protections must be ensured without denyingindividuals opportunities to choose from the lifestylestypically available in their communities. Implicit in theseefforts is a new definition of quality of life for people withdisabilities and a new struggle to make scattered examplesof excellence in supported living the service norm.

Quality of life is subjective; it is defined and redefinedby each of us over the course of our lives. People withdisabilities want qualities in their lives that are like those oftheir fellow citizens. They want lives that are as varied, asrich in texture, occasionally as eccentric, but mostly astypical. People with disabilities want lives that reflect theirpreferences and desires, regardless of whether or not theycan speak for themselves. Systems of support must includepeople who are skilled at "listening" to words and behaviorand understanding the individual. And those systems mustkeep listening because what is wanted today is often notwhat is wanted tomorrow.

With these things in mind. CSLA services should beginwith choice. The plan should be based on the choices andpreferences of the individual and he developed with thcindividual and those persons agreed to by the individual.The interdisciplinary teams that currently plan community

services typically start with what exists rather than whatindividuals may want. They frequently reinforce the imagethat professionals know best and that the individual, family,and friends have only adjunctive knowledge. Whileprofessionals should not be cast aside in a rush for commu-nity participation, their role should change. The individup.ls,with their families and friends, should determine the visionof the future while professionals help in achieving thatvision. This shift in roles not only empowers individuals,but maintains the protections now existing in professionalsupport. It also includes the protections that are presentwhen concerned family and friends are involved. It is truethat the best protection that any of us have are the familyand friends who care about us.

The only effective way to learn what someone wants inlife is by listening. We must begin by listening to the wordsand behavior of the individual, and then we must listen tothose who know and care about the individual. Thetechnology by which we gather, organize, and makedecisions bared on the resulting information is referred to asperson centered planning.

Because what people want today may not be what theywant tomorrow, person centered planning is the ongoingexpression of choice by individuals and their families.Agencies involved in person-centered planning recognizethat people may request. at any time, a review of their planby the service provider(s) or the funding/oversight agency.

...it is important to introduce market forcesby allowing individuals...to "fire" their

service providers, for any reason, and havethe funds be available to support the pur-

chase of services from an alternative,qualified provider.

Empowering individuals and their families to review andredesign their plans clearly gives individuals an opportunityto seek redress where choice has not been honored or theindividual is at risk. Where families and individuals havedivergent opinions about the services, the individual shouldhave the final say.

One of the frequently asked questions regardingsupported living is how often the person centered plans

National Perspective 7

should be brought up to date. The answer is, as often asneeded. People's desires and need for change do not occuron aa annual or quarterly cycle. People with disabilitiesshould not have to wait for a scheduled review meeting tochange who they live with, where they live, or what they doduring the day. Service providers have raised a concernabout excessive requests; "excessive" requests for reviewsare rare and the potential benefit far outweighs the cost.

People with severe disabilities rarely have control overtheir boundary choices, that is where they live, who to livewith, and what to do with their time. This absence of controlis the single greatest difference between the lives of peoplewith severe disabilities and those without. To compensatefor this it is important to introduce market forces byallowing individuals (or their representatives) to "fire" theirservice providers, for any reason, and have the funds beavailable to support the purchase of services from analternative, qualified provider. Certainly this is the mostdramatic change in the typical service structure. It begins tomove the individual from "consumer" to "customer." Itmakes it clear that the people who must be listened to arethose with the disabilities (and their representatives). It isbased on the premise that people with disabilities (and thoseclosest to them) know what is in their best interests.Because people are living in their own homes, changingwho provides the support does not require changing wherethe individual lives. While real control is only present whenan individual can "fire" one provider and "hire" another,typical practice will be different. The power to "fire" willresult in the desires and preferences of people being takenseriously.

Simply supporting people in their choices is notenough. Unless creative use is made of the resources of ourcommunities, people will still have lives that are isolatedand the costs will increase. Therefore, there is a need toencourage the use of natural supports while assuring that thehealth and well being of the individual participants areprotected by requiring that training be commensurate withduties and responsibilities. Requiring that a paid neighborgo through three days of training before he or she can helpyou prepare meals is an effective disincentive to the use ofnatural supports. However, having no training requirementsfor people who provide limited, specific services, increasesthe risk of harm or neglect from a lack of knowledge. Forexample, a neighbor providing supports to someone who hasa seizure disorder that is not controlled by medicationshould have training in what to do when there is a seizure ifthe neighbor is providing supports when there is no otherknowledgeable person present. Requiring that the trainingbe commensurate with duties and responsibilities allows thetraining to be tailored to the desires and needs of the indi -vidual and increases the pool of available natural supports.

The experiences of the pioneers in providing supportedliving indicates that the best protection that anyone can haveis an active circle of support. It is also clear that a good

support circle takes a great deal of time and effort todevelop. The monitoring boards required by the CSLAlegislation can serve as the quality assurance bridge fromwhich circles of support can be developed. The requirementfor a "monitoring board" can be used to establish qualityassurance review teams. The composition of these teamsmust be agreed to by the individual and the service provider.Each individual should be visited at least twice a year by areview team, which determines that: a) the living arrange-ments and the support plan provide for the health and safetyof the individual; and b) that in the opinion of the indi-vidual, the individual's representative, and the review team,the services documented in the support plan are being

CSLA is a pilot effort. Its success willbe determined by our ability to break free

from traditional "top down" thinking aboutservice provision and quality assurance to

conceive a system that responds to oneperson at a time.

delivered, are having the desired effects, are satisfactory tothe individual, and are congruent with the choices and needsof the individual.

To be effective these activities must be paired with arequirement that service providers respond to any concernsraised by the quality assurance review teams. Providersmust indicate what actions they will take, when they willtake the actions. and who will carry the actions out. Theindividuals receiving the services may reject a serviceprovider's response and require that an alternative responsebe developed. The statutory requirement for a monitoringboard initially raised concerns about excessive intrusivenessinto the lives of people who were seeking independence.The actual review, with its four questions. is focused awayfrom process and toward outcomes, consumer satisfaction.and the "fit" between the services and the individual.

CSLA is a pilot effort. Its success will be determinedby our ability to break free from traditional "top down"thinking about service provision and quality assurance toconceive a system that responds to one person at a time.Success will require the capacity to listen to what people areasking for, help them achieve their desired lifestyles whileassuring health and safety, and measure success by focusingon outcomes rather than processes.

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Michael Small is Director of the Developmental DisahilitiesCommunity Support and Access Unit in the School ofMedicine, University of Maryland, Baltimore.

8 NatiOnal Perspective

Quality in Community Residences: Subcommittee Reportby Robert Gettings

A panel of the U.S. House Small Business Committeerecently reported that a 14 month staff investigation haduncovered "...substantial evidence that patients and taxpayersare frequently being exploited by small businesses that runhomes for the mentally retarded and the developmentallydisabled." These and other findings were summarized bypanel chair Ron Wyden (D-OR) at a March 29,1993, hearing.

The decision of the Committee's Subcommittee onRegulations, Business Opportunities, and Technology toinvestigate community residences was triggered by com-plaints from parents and direct care workers in Oregon andelsewhere. In his opening statement, Rep. Wyden empha-sized the seriousness of the findings, noting that while"...most providers appear to be conscientious and profes-sional guardians of some of the nation's most vulnerablecitizens," the Subcommittee:

...found evidence of retarded or severely disabled personsbeing raped, beaten and even killed in these facilities.Medicines were misadministered with sometimes disas-trous results. The clients had their possessions...stolen. andthey were shut-off from family and friends. State publicofficials ch irged with their oversight had little or noknowledge of conditions within their homes... or at bestfound out only after terrible events had occurred.

He also reported that the Subcommittee had uncoveredevidence that "...through complex financial organizations,managers of 'non-profit homes make cash-killing by devel-oping for-profit companies to slxvice these 'shell' facilitiesthrough over-priced, sweetheart deals." Operators ofcommunity residences, he added, often evade effectiveoversight because responsible state and local officials lackthe resources to perform vital quality assurance functions.Among the other concerns raised by the Subcommittee'sinvestigation were a) inadequate salaries and benefits fordirect care workers and resulting high staff turnover andlack of continuity of care; b) "conflicting and confusingjurisdictional problems", especially in monitoring corpora-tions that operate in a number of states; c) lack of a strongfederal oversight role; d) lack of adequate competitionamong providers of community services and resultingdifficulties in terminating chronically substandard agencies;and e) absence of appropriate training opportunities for staff.

Rep. Wyden concluded by noting that "we must considerhow to build better quality assurance systems." He called fora) improved state standards to protect vulnerable populations;b) a national information system to encourage qualityimprovements: c) actions to discourage states from over-reliance on any one provider agency; and d) efforts to "beefup" financial auditing of providers.

During the hearing, a mother from Oregon reviewed themany problems her adult son had encountered and said thatstate officials ignored her repeated requests to intervene.Parents from Michigan indicated thdt their dauthter wasraped by the operator of the home and criticized stateofficials for failing to properly monitor the home andinvestigate the criminal behavior. The Director of SpecialAudits for the Massachusetts Auditor's Office tes:ified that"...explosive growth in the [community residential services]industry, spurred by deinstitutionalization, [has] outstrippedthe Commonwealth's ability to effectively regulate the pro-grammatic content and financial conduct of provider groups."He noted that recent fiscal audits had uncovered $7 million inmisappropriated funds by just three provider agencies.

Toni Richardson. Commissioner of the ConnecticutDepartment of Mental Retardation, urged the Subcommitteeto place its preliminary findings in the proper perspective.While conceding that state monitoring procedures are notfoolproof and can be improved, she pointed out that repeatedfollow-up studies have confirmed that "people [with develop-mental disabilities] are better off living and working in thecommunity. Their lives are richer and their choices arewider." Maintaining consistently high quality communityresidential services, Commissioner Richardson indicated,depends on the following interrelated variables: a) theagencies and personnel who serve people with developmentaldisabilities must be competent and motivated to provide highquality services; b) people ,k ith developmental disabilitiesmust be afforded adequate protection, which requires somelevel of traditional regulatory surveillance but, more impor-tantly, the continuous involvement of family members andother interested citizens in service planning and delivery; andc) a commitment by the state and other responsible parties toexercise their oversight functions conscientiously and to takeswift, decisive actions to correct deficiencies. She added that,"Piling regulatory mandates on top of one another and dis-patching state survey teams to inspect programs are clumsyand limited tools for achieving the outcomes we desire."

The Subcommittee's March 29 hearing may be a signalthat the rapidly expanding enterprise of serving people withdevelopmental disab".des in community settings is nolonger to be exempted from the types of major nationalexposés that once were confined to large, public institutions.If so, efforts to improve the effectiveness of monitoringsystems and community quality enhancement initiatives willtake on an even higher priority.

Robert Gettings is Executive Director of the NationalAssociation of State Directors of Developmental DisabilitiesServices. Inc.. Alexandria, Virginia.

1 0

State's Efforts 9

Quality Enhancement: A Commitment in Pennsylvaniaby Nancy Thaler

"...a man's reach should exceed his grasp.Or what's a heaven for?" - Robert Browning

People with disabilities have the same dreams in life aseveryone else. We all want to love and be loved, to findfriendship, to win our share of prosperity, to accomplishsomething that will make a difference, and to be recognizedfor who we are and what we've done. But everyone needssupport to make their dreams come true.

Family and friends are our first line of support. It isnatural to seek help first from those who know us best andwho share our dreams. From our family and our friends wemay receive understanding, advice, a helping band, andsometimes even money. And sometimes this is enough.But, there are also times when some of us need more.Sometimes we need supports that come from organizationsand from strangers.

How can organizations and strangers, providingsomething we call formal services, possibly help anyone toreach their own very personal life dreams? The answer mustbe that those strangers and organizations must make it theirbusiness to find out the hopes and the dreams of each personthey attempt to serve. We can only help if we know whatour goals are, and our goals are the dreams of each personwe serve. The only way to discover those goals, thosedreams, is through communication.

The first step is for us to find out from the person weseek to serve what it is that the person wants. The truequality of the formal service being provided, its veryjustification for existence, will be determined by that personas that person measures his o, her dreams. You might saythat the quality of service hangs on how much we strangersbecome friends, on how much we get to know what we needto know to do our jobs, and on how well we come to knowthe person.

There is a fear that if we try to help everyone reach hisor her dream, we will be overwhelmed and paralyzed. Itseems too big a task. But, on the contrary, involvement inthe fulfillment of a dream is a source of energy. Nothingdrives one like a personal commitment. And nothing is asreinforcing as sharing the joy of a dream realized.

Then again, how can we be sure we're doing the rightthing? We can only find out by asking. We can askourselves, our peers, anyone, even those in authority. But,most of all, we must ask the people we intend to assist.

In Pennsylvania we've made some decisions about whois responsible for quality in the services we provide andabout how we are going to go about pursuing quality. We'vedecided that quality is everyone's responsibility. We'vedecided that-an active, vital rartnership among people who

are caught up in the search for quality is preferable to a well-staffed, administrative contingent whose job is only to putmarks on a checklist and to publish reports. We want theright people, the ones who really care, to be on the watch.

Specifically, we expect that in each county in '.ie state agroup will form made up of consumers, family members,advocates, providers, governmental staff members, andconcerned citizens with the support of the County Office ofMental Health and Mental Retardation. The job of theCounty Office, with support from the state, is to make surethat this group includes the most interested, the most vocal,the most concerned people. This group it could be called aquality enhancement committee - will work first to get toknow each other as people and then to develop a consensusof shared values and expectations. From this commonunderstanding of purpose and direction will come theimpetus to ask the questions that need to be asked: To whatextent are generic services available to people with mentalretardation? Can we say that the individuals we serveparticipate as full and equal members of the community?Are consumers and family members involved at all levels ofdecision-making? Do the services we provide really helppeople to learn and grow? Are the people for whom weprovide services satisfied with those services? Is our workaddressing the life dreams of the individual?

The process must be in the form of a loop. We setexpectations, we investigate and discover what's reallyhappening, we measure reality against our expectations. andthen, to complete the loop, we plan for improvement. Andthe process goes on.

Some might say there are risks to this approach. Weforsake standardization; we give up uniform data collectionto demonstrate our achievements. But in trade for standard-ization. we hope to gain the enthusiasm that local empower-ment creates. In place of data collection on compliance, welook for widespread personal involvement. Some may ask,"What will happen to quality if we depend on local initia-tive'?" Well, what chance have we at real quality if our onlytool is a checklist wielded by an employee of the state?

Enhancing the quality of the services we provide is anever-ending pursuit. The harder we work to reach someoptimal state, the farther it may seem to move away from us.But quality is not something to be grarped once ard for all.Rather, it is the art of reaching. It requires tolerance forconstant dissatisfaction. Satisfaction is the enemy of quality.We must celebrate our accomplishments only while planningour next moves.

Nancy Thaler is Deputy Secretory for Mental Retardation,Pennsyhania Department af Public Welfare. Harrisburg.

ii

10 State's Efforts

Quality Assurance for Quality of Life in Utahby Georgia Baddley

Ralph is a man with varied interests who shares anapartment with a friend and receives the support he needs tolive independently from a Utah provider agency. He has ajob landscaping the apartment complex where he lives andis actively pursuina hobbies and interests of his choice. Ithas been two years since he moved out of a nursing homeand into his own apartment, and many changes haveoccurred in his life.

When Utah's Quality Assurance team first met Ralph hehad difficulties with mobility and was slowed down bychronic seizures. These conditions prevented him fromattending his sheltered employment setting most days.Today. as a result of focusing providers on quality of lifeoutcomes for Ralph, his seizures are under better control, heis more successful in his job, and he gets around indepen-dently using public transportation. Ralph is involved withhis family again, makes his own decisions about his dailyroutine, makes friends wherever he goes, and enjoys visitingold friends and taking them plants that he has grown in hisgarden. Everyone agrees Ralph's quality of life has signifi-cantly improved.

In 1990, the Utah Division of Services for People withDisabilities (DSPD) changed the structure and focus of itsquality assurance activities. The change was in response tochallenges from the Human Services Research Institute(HSRI) in Boston, and a Legislative task force. A QualityAssurance Academy, whose membership included represen-tatives of all the stakeholders in the state, was established tooperationalize a new focus on quality of life.

The Academy proposed that DSPD enhance technicalassistance, develop F.tandards emphasizing internal providerquality assurance systems, fade standard compliancemonitoring, and develop consumer satisfaction surveys.Three principles were then identified upon which servicesfor people with disabilities in the state of Utah should bebased: choice, community membership, and individualiza-tion. These principles, along with the guidina DSPDmission "to promote opportunities for persons with disabili-ties to participate fully in Utah life," were incorporated asthe major components of a new DSPD Quality Assuranceprogram. That program includes assessment of providerservices on four standards: I) personal growth and develop-ment: 2) consumer participation in his/her own IndividualProgram Plan: 3) consumer participation in Utah life; and 4)the provider quality assurance program. The focus of thestate survey process was changed from paper and processcompliance to observing the quality of real world outcomesfor individuals receiving services.

Utah's outcome-centered approach involves observingand talking to the individual receiving services and to

attendant staff. The person-centered focus of the processrequires surveyors to obsen e for the presence of behavioralindicators of acceptable outcomes and ask questions forclarification. For example, staff wait for the individual tocomplete a task, even when the person is slow, rather thancompleting it for them. Also, staff only provide as muchassistance as is necessary for success. And, when speaking,staff use a friendly, age-appropriate tone of voice.

Incentives such as awards for superior performance andopportunities to negotiate less frequent surveys have beenincluded in the plan to encourage providers to developviable quality assurance plans and develop innovativeprograms. These agreements for less frecuent surveyingfree quality assurance specialists to concentrate theirattention on program development.

The first year of implementation was a hold harmlessyear. At the end of the following year (1992) our datashowed that 68% of the surveys had resulted in satisfactoryratings on all four standards. When unsatisfactory assess-ment required a plan of correction from the provider.technical assistance was offered to the provider from theDivision office. Feedback from the providers who haddifficulties meeting expectations suggested that some ofthem did not take the changes in focus seriously and did notmake the necessary changes in their agencies. Requiredplans of correction helped them to focus on what theyneeded to change and develop a plan for doing so. Provid-ers who had a positive experience with the new surveyapproach felt that our focusing on outcomes for peopleinstead of paperwork helped them to show off their pro-grams and demonstrate what they do regularly. Theybecame ambassadors for this approach to surveying.

The quality of life has changed for many people in Utahbecause of this change in focus. The annual consumersatisfaction survey has indicated that the people receivingservices, or their families, are satisfied with the servicesthey receive. Positive changes include many examples ofpeople with jobs they like, participating actively in the lifeof their communities, and pursuing their hobbies andinterests. This has happened because someone has made theeffort to find out about their individual interests and desires.People have generally become more involved in dec,'.ionmaking surrounding their lives. Overall, there is now a senseof people wanting to find new ways of including peoplewith challenging disabilities in Utah life by treating eachperson as an individual with unique wants and needs.

Georgia Baddley is Director of Program Quality Assuramv.Department of Human Services, Division of Services fOrPersons with Disabilities. Salt Lake rim uwh.

1_ 2

State's Efforts I I

Continuous Quality Improvement in Oregonby Darla Wilson, Jimmy Clarke, and Meredith Brodsky

It is no overstatement to say that Total Quality Manage-ment (TQM) is sweeping the United States. References tothe need for a transformation in American organizationsfrom top-down autocratic models of management toparticipatory, quality-driven systems appear in Americanmedia every day. Examples of private, for-profit companiesin the United States changingtheir management systems toTQM models include some ofthe biggest and most success-ful: Motorola. Ford. andXerox are but three.

Recently the expectationsof customers, taxpayers, and

community, program managers. and members of a program'sboard of directors. The characteristics are detailed in amanual of quality indicators that describes a quality assess-ment and improvement process with four primary steps: 1)forming a management team; 2) gathering survey informa-tion; 3) selecting areas for improvement; and 4) forming an

improvement team. In Para-

We believe and hope that these systemswill effectively allow small organizations

to change to gain the benefits of a totalquality management approaCh.

the demands of competition have begun drivin2 many otherUnited States organizations, including not-for-profit andgovernment agencies. towards a TQM approach. In Ore 2on.for example, 40 top business leaders recently told staff andlezislators that they needed to adopt the principles of TotalQuality Management to more effectively and continuouslymeet the needs of Oregon's citizens and taxpayers.

There is often a very large gap between a company'sdesire and its practical ability to convert to a TQM approachfor providing excellence and continuing improvements ingoods and services. Many of the words used to describeTotal Quality Management sound great teamwork,continuous improvement, delighting customers - but the factis that the change takes a lot of work. Large private UnitedStates companies have spent millions on quality experts toteach and guide their transformation efforts. Most smallcompanies, especially eovernment-funded and not-for-profitgroups, cannot afford such an approach.

With this reality in mind, the Oregon Mental HealthDivision funded Paradigm Systems to develop a qualityprocess for use in residential and vocational programs thatsupport people with developmental disabilities. The goalwas to assist in introducing the benefits of Total QualityManagement with a minimum need for outside expertise.The resulting system of continuous quality improvement hasbeen customized in many ways for this type of non-profit,human services organization. For instance, it is sometimesdifficult to approach "customer satisfpction" with peoplewho only recently are being asked about their preferencesand who may have limited communication skills. For thisreason, a multiple perspective approach to quality becamevery useful.

Many groups of people helped identify characteristicsof quality in services for people with developmentaldisabilities: people with developmental disabilities, theirfamilies, staff who work in their programs. members of the

digm System's approach, manygroups contribute manydifferent types of informationabout desired characteristics ofquality with a prouam's actualcurrent performance. Thespecific areas, number of

survey items, and respondents of the surveys include: 1)

management practices (10 items; board of directors, manag-ers, and key staff); 2) advocates involved in monitoring (30items; staff self-evaluation, and 3 outside visitors); 3) qualityof working conditions (8 items; support staff); 4) consumerquality interviews (12 items; service consumers); 5) familyquestionnaires (9 items: all families); and 6) staff satisfaction(8 items; all staff). This information can be used in manyways: in identifying issues for strategic planning, as the focusfor a structured improvement process, for targeting trainingactivities, and to fuel informal change. Materials presentstructured activities that can be useful in selecting improve-ment areas and tackling improvements.

Another reel-world adaptation in Paradigm System'sContinuous Quality Improvement System is a set of "bestpractices" that describe areas of different programs that excelin some particular area of service delivery. By sharinginformation about successful efforts to meet the needs of anddelight Oregonians with developmental disabilities, thesebest practices provide other programs with a type of descrip-tion benchmark to help with their own improvement efforts.

Like any product that supports quality improvementprograms. we actively pursu ..! feedback from our customersabout the utility, effectiveness, and usability of our qualityimprovement concepts. methods, and materials. In additionto the changes we regularly make based on this feedback, weare currently adapting surveys and activities to hospiceprograms. to programs that provide support to people withmental illness, and to the field of education. We believe andhope that these systems will effectively allow small organiza-tions to change to gain the benefits of a total quality manage-ment approach.

Darla Wilson. Jimmy Clarke and Meredith Brodsky, Ph.D.are all with Paradigm Systems, Salem, Oregon.

13

12 State' ,:ffons

A Reorientation to Quality Assurance in New Yorkby Thomas Cuite

Can a governmental quality assurance process be de-vised to encourage providers to focus differently on serviceprovision? Can that process directly address the expressedgoals and objectives of consumers and providers, ratherthan rely on a review of systems and procedures? Can itendorse an organizatior. for its strengths as well as identifyits weaknesses? Is it possible for a quality assuranceprocess to focus on specific values without neglecting theessential elements of individual health, safety, and protec-tion? Can it effectively assess providers on their ability tomanage, self-evaluate, correct. and achieve positiveoutcomes? A system being developed in New York isseeking positive responses to these questions. It relies onseveral factors already existing in many provider organiza-tions, and weaves them into a new monitoring and regula-tory process. This system - called COMPASS - is named forits key elements: Consumerism, Outcomes, ManagementPlans, and Self-Surveys.

COMPASS assumes that most agencies that provideservices are well intended and capable of always improvingwhat they do, and that they continue to both aspire to andachieve improvements. It also assumes that the organiza-tion can, and will, manage itself well and that it is notnecessary for the reviewers to identify routine maintenanceand/or operating problems that may exist on a certain day.

The COMPASS system relies on an agency's ability toself-evaluate and manage, and thereby achieve objectivesthat promote the desired outcomes of people with develop-mental disabilities. The goals of COMPASS are to (a)streamline the review/regulatory process via one visit to anagency to license all of their programs; (b) encourageconsumerism; (c) exempt well operated organizations fromdetailed third party regulatory review; (d) promote widelyvalued outcomes and encourage organizations to focus onthem; (e) encourage organizations that may not be perform-ing well to improve by adopting these methods; (f) creategreater awareness and understanding of regulations; and (g)promote goal-oriented activity for employees. The role ofthe regulator in COMPASS is to review outcomes in-depthand, when satisfied, cursorily verify that the agency has anactive and thorough process to be responsive to consumerinput, that it has a management plan of its own design thatenables continuing quality improvement, and that itsemployees conduct a self-review, including a review ofregulatory compliance and an assessment of the agency'sprogress. A satisfactory in-depth review of outcomes andminimum verification that the agency has engaged in aquality management program will result in continuedlicensing.

The COMPASS model is being tested by 24 agencies inthe state for 12 months, with an evaluation to be completedby September, 1994. The demonstration period will enableall concerned to determine whether a sound recertificationdecision can be made based upon a review of outcomes, andwhat the impact of this model will be for provider organiza-tions with unique characteristics and differing operatingphilosophies.

The outcomes promoted by COMPASS - independence,inclusion, individualization, and productivity - are embodiedin the objectives of many state programs, many provider andconsumer organilations, and federal and state programrequirements. They are identified as components of qualityof life in the research literature and valued outcomes reformsin several other states. It is the definition and assessment ofthese outcomes thr.t is the key and most difficult element oflinking the operatii,g and regulatory environments. COM-PASS has been able to draw on the definition and assessmentapproaches developed, evaluated and tested in other states.As a result of combining these elements in a self-monitoringand review process. COMPASS will permit both providersand reviewers to focus on the larger and longer term objec-tives valued by consumers and maintain the successfulsysteMs and procedures needed to achieve the outcomes.

Too often, passing the regulatory test becomes the soleobjective of an organization, and its employees lose sight ofthe purpose of a specific regulatory requirement. Suchorientation actually impedes improvements, keeping organi-zations at or near the minimum level of regulatory compli-ance. COMPASS provides an incentive for organizations tothink and behave differently. It is not intended to be insti-tuted in agencies that seek only to pass a regulatory reviewand do no more than required by the letter of the law orregulation. It can only work with agencies that are committedto and capable of working to achieve the identified valuedoutcomes, and willing to view the quality assurance processas an opportunity to assist them in improving.

COMPASS is a new attempt to integrate the benefits ofregulatory certification activities with a mechanism thatreflects how an organization operates and enhances thequality of its services. The result should be an enhancedquality of life for the individuals served by the participatingprovider organizations.

Thomas Cuite is Deputy Commissioner of Quality Assurance.New York State Office of Mental Retardation and Develop-mental Disabilities. Allmny.

14

State's Efforts 13

Service Enhancement ThroughSelf-Examination in Connecticut

by Joseph Harrison-Becker and Dennis Michell

What are the opportunities created by a service thatfosters respect and dignity, fulfilling relationships, choice,personal competence, and presence and participation in lifefor individual:, with disabilities? How satisfied with theoffered support are the persons receiving service and theirassociates? How might providers of service change theiractions to improve individuals quality of life? Self-examination, based on values, is the route to answeringthese questions during the Service Quality Review Process(SQRP) and Values Explorations Workshops (VEW)facilitated by the Service Enhancement Unit, ConnecticutDepartment of Mental Retardation.

The SQRP and VEW activities are aimed at helping dayand home providers of service improve the quality ofsupport they give to persons with disabilities, and thereforeimprove the quality of life for those individuals. Serviceenhancement participation is voluntary. Providers ofservice select or create the kind of enhancement activitythey wish to participate in be it VEW, SQRP, or a differentnegotiated activity.

VEW, a 20-hour values exploration event with 10 to 30participants, assists people in examining their beliefs andvalues about individuals with disabilities and the servicepractices that support them. Participants in VEW includethose receiving services, friends and relatives of peoplereceiving services, interested community members, directservice staff, and managers of service organizations. VEW,an open participatory forum, includes:

Discussion of values, their meaning and importance, andhow values relate to real life situations and experiencesfor persons with disabilities (e.g., What are respect anddignity? Why are respect and dignity important? Tell meabout the experiences in services that relate to respect anddignity?).

Wall charting of participants' comments throughout thediscussion. Participants "see" what they think and reflecton everyone's ideas during discussion. After the VEW,these comments are typed and sent to all participants.

SQRP is an opportunity for providers and others to dothe following:

Examine actions of a service and the beliefs held by thoseassociated with providing service in the light of values(assessment phase).

Develop enhancement actions to take (brainstorming.planning phase).

Carry out actions based on values in support of personsreceiving services (change phase).

SQRP is voluntary and requires permission by providersof service and service participants to occur, with all informa-tion maintained confidentially. Specific components ofSQRP include:

A team, often including persons with disabilities andinterested community people, conducts the review. Teambehavior and sensitivity to participants' dignity whenvisiting the service is negotiated prior to the review.

Team members, visiting the service site, listen to personsreceiving services, their relatives, friends, advocates,guardians, staff, and others and observe what is going onwithin the site.

Team members write about what they see and hear, andreflect on values as they apply to given service situations.The story is further fleshed out by people associated withthe service.

Service providers and others ponder the story, brainstormservice changes based on values, and plan and implementenhancement actions.

The Service Enhancement Unit continually examines itsown actions to see if what it does is in accord with the valuesit seeks to instill and/or sustain in others. Just as it isimportant for service providers to continually explorechanges that will benefit consumers, the Unit continuallychanges what it does. The goal of our changing is to buildmore trusting relationships, and expand the level of participa-tion and choices for providers of service as they seek toimprove the quality of life for persons with disabilities.

Participants have said the VEW has directly affected thelives of people who receive support. For example. one homemanager said she met with staff and began discussions ofvalues: as a result, staff have altered how they supportindividuals. Outcomes of the SQRP have included increasedcontact among persons and their relatives, more decisionmaking at home and in the community. and individualsmaking more money as a result of their participation inperformance studies. Opportunities for life-fulfilling experi-ence are a result of self-examination.

Joseph Harrison-Becker and Dennis Mite lien are Coordina-tors of Service Enham.ement, Service Enhancement Unit,Department af Mental Retardation, East Hartford, CT.

1 5

14 State's Efforts

Performance Contracting for Service Quality in Minnesotaby Robert Meyer

In 1971, the Intermediate Care Facility for the MentallyRetarded (ICF/MR) program was established under Medi-caid. Its primary goal was to uperade large institutions byproviding federal cost-sharing for care in facilities meetingfederal standards. Because of federal cost-sharing, manystates certified community group homes as ICFs/MR.Minnesota led the way; by 1982 its 2412 residents insmaller, community ICFs/MR were 25% of the nationaltotal. Since 1982, Minnesota's community ICF/MR popula-tion has remained virtually unchanged as the state hasfocused on Medicaid waiver and state/local financedcommunity services. A major advantaee of this focus hasbeen freedom from the ICF/MR standards' lack of flexibil-ity, focus on process and record review, regulatory burden,limited relationship to people's quality of life and personalpreferences, and the associated human and dollar costs.

As part of a series of reforms in developmental disabili-ties services. the Minnesota Legislature has authorizeddemonstration projects to improve ICF/MR services byfocusing on the achievement of specific consumer out-comes. Payment for services will be based on a contract forachievement of outcomes rather than extensive cost report-ing and documentation of compliance with process stan-dards. Demonstrations are expected to last four to five yearswith the potential of adding programs over time. It isanticipated that the demonstration projects will: 1) provideincreased choices for consumers; 2) increase consumersatisfaction with the services; and 3) achieve the lifestyleand personal development desired by consumers.

Providers will be selected to participate in this demon-stration through a request for proposal.process. Selectioncriteria will include the provider's: 11 commitment toproviding high quality services; 2) past performance incomplying with licensure and certification standards; 3)ability to develop creative alternatives to existing regulatoryapproaches in achieving service quality; 4) financialstability; 5) cost effectiveness; and 6) establishment of localservice networking and cooperation among agencies.

The performance contracts and associated outcomeindicators will be required to include attention to: 1)personal health, safety, and comfort; 2) personal growth,independence, and productivity; 3) client choice and controlover daily life decisions; 4) client, family, and casemanager's satisfaction with services; and 5) communityinclusion, social relanonships, and fulfillii,g valued commu-nity roles. Other areas may be established by an advisorygroup. Minimal assurances and procedures will be requiredto assure that health and safety will not be compromised.

Additional program flexibility will be required from thefederal government to allow waivers of ICF-MR regulations

or their interpretations. For example, specific individualoutcomes, related performances of the provider, and aprotocol for their assessment will need to replace universalstandards for active treatment in the demonstration.

Extensive training and technical assistance of consum-ers. families, providers, and county and state agency staffwill be conducted to implement the demonstration projects.with additional administrative resources requested. Partici-pating service providers will also be expected to allocateadditional dollars for training staff and consumers.

Review of the documented outcomes for individualswill be conducted annually by their case managers and legalrepresentatives. Monitoring of service quality will also bedone by family members and other trained volunteers.Individual outcome evaluations will include: 1) achieve-ment of client outcomes and performances; 2) client, family,and case manager satisfaction with services and supports;and 3) recommendations for improving the services.

Each provider will be expected to implement systems ofself evaluation and continuous quality improvement.including s-.Tveys and interviews with consumers, staff,board members, advocates, and county personnel; othermethods of feedback; and training and technical assistanceto ensure improvement of service quality. The whole projectwill be evaluated over several years, examining: 1) effectsof performance contracting on quality of life; 2) cost andservice effectiveness; 3) determination of performanceindicators most predictive of broad outcomes desired; and 4)recommendations regarding statewide implementation. TheUniversity of Minnesota will be involved in the design andimplementation of this evaluation.

We believe this demonstration will lead to sevenimportant outcomes: I) increased influence of consumersand families in the development, monitoring, and improve-ment of services; 2) service quality measured in terms ofdesired outcomes for the consumer, with outcomes formingthe basis for service improvement; 3) development of asingle set of consumer outcome indicators for systemwideevaluation and improvement of services; 4) increased directresponsibility for providers to improve services and imple-ment quality management efforts; 5) increased state focuson technical assistance and support: 6) establishment oflocal service networks to provide broader arrays of choicesand increased service effectiveness, coordination andefficiency; and 7) determination of effective methods tosecure, evaluate, and pay for desired consumer outcomes.

Robert Meyer is Assistant Director. Division for Personswith Developmental Disabilities. Minnesota Department 4Human Seivices, St. Paul.

16

State's Efforts 15

Consumer Monitoring of Services in Oklahomaby Dennis Bean and John Gajda

Choice and empowerment have rightfully emerged ascentral components of many human service systems provid-ing supports to individuals with developmental disabilities...nd their families. Oklahoma efforts to embrace andimplement these concepts have included the development ofa consumer monitoring program. The program providesindividuals served and their families an opportunity toevaluate providers of services, impact the quality andresponsiveness of services, and exercise informed choicc.This program is called Oklahoma Advocates Involved inMonitoring (0K-Aim), and it is coordinated by the TulsaAssociation for Retarded Citizens.

OK-Aim was born in 1990 when the state's recentcommitment to aggressive expansion of community alterna-tives presented challenges to consumers with regard to theirexercise of choice. In three years the number of communitysupport providers grew from 40 to 103. At the same time thearray of supports grew significantly to include not only smalland medium size group home services, but an array of in-home supports. While choice was considered an essentialcompouent of the state's service system, the integrity ofchoice was compromised by the difficulties individuals andfamilies experienced in obtaining information that wouldallow them to distinguish among various providers orsupport types. It was also evident that while existing QualityAssurance provided minimal standards for services, thesemechanisms were unable to adequately assess or influencethe subjective elements of service delivery that truly definequality. Survey processes resulting in licensure simply couldnot speak to the presence or absence of comradeship, mutualrespect, and other human aspects of environments.

To change this, a group of consumers and familymembers spent a year and a half reviewing consumerevaluation activities in other states, borrowing many con-cepts, and refining and inventing others. One of the firstproducts of this effort was the following set of guidingprinciples that served as a focus for the development ofOK-Aim:

People with developmental disabilities are people first.

All people are entitled to the same privileges and responsi-bilities.

Services should provide the assistance needed to allowpeople to be full members of their communities.

Consumers should be able to choose the providers ofservices they receive.

Consumers should evaluate the effectiveness and appropri-ateness of the services they receive.

The opinion of the primary consumer shall be given themost important consideration in evaluating serviceprovider agencies.

By making informed choices based on informationdescribing a service provider agency's performance.consumers will influence the quality and responsiveness ofthe services.

The group also developed 36 expectations consideredessential elements of quality services. For each expectationguidelines were designed to clarify attributes of excellence aswell as circumstances considered unacceptable.

Through OK-Aim, consumers volunteer to visit thehomes of individuals receiving residential supports fundedthrough the state. The focus of each visit is to understandrelationships within the home, explore opportunities forrelationships with neighbors, support inclusion in thecommunity at large. and 2ain a general impression of thehome's cleanliness and safety. At the conclusion of eachvisit, volunteers share their impressions and reach consensuson each of the 36 service expectatior.s. Their conclusions aresynthesized into a written report, which frequently includesrecommendations for service enhancement. The report isshared with the provider, who may respond with the knowl-edge that the responses will be incorporated in the document.The final report is made available to consumers.

Nearly 100 individuals are currently serving as OK-Aimmonitors. Approximately 55 are parents or otherwise relatedto individuals served, and nearly 40 are primary consumersof services. The remaining individuals are citizens whoparticipate in surveys of larger facilities.

The State has been pleased that providers have widelyembraced the program. OK-Aim visits do not have the auraof regulatory surveys. The interactions of volunteers haveproven productive not only in the development of generalrecommendations for service enhancement, but in theprovision of on-site practical technical assistance by volun-teers. In addition, site visits have resulted in the develop-ment of many meaningful personal relationships betweenOK-Aim volunteers and individuals served. In summary,OK-Aim has demonstrated the capacity for successfulw:.!rking relationships between state funding agencies,advocacy groups, consumers, and providers to achievemutually desired outcomes defined by individuals served andtheir families.

Dennis 13ean is Director of Quality Assurance, OLlahomaDevelopmental Disabilities Services Division, OklahomaCity. John Gajda is Chief Executive Officer, Tulsa ARC.

1 7

16 State's Efforts

Gathering Quality-Relevant Data in Coloradoby Judy Ruth and Lynne Struxness

Considerable attention is currently being given toimproving the quality-relevance of data gathered aboutindividual agencies and settings serving persons withdevelopmental disabilities. State agencies with administra-tive, policymaking, and resource allocating responsibilitieshave a need for quality relevant information about theservices for which they are responsible on a system-widebasis. This need is being addressed in Colorado through aseries of studies using an instrument entitled COPAR,Colorado Progress Assessment Review.

The Colorado Division for Developmental Disabilitieshas undertaken a series of longitudinal studies of personswith developmental disabilities who are receiving supportsfrom the Division. The purpose of these studies is to deter-mine whether progress is being made towards the Division'smission to provide these persons with a better quality of life.Waich includes community inclusion, choice-making, self-d :termination, relationships, exercise of competencies andttlents, personal security and self-respect. These studies uset le COPAR questionnaire.

One area being examined using the COPAR question-naire is community inclusion. The instrument measuresparticipation in 50 activities that are typical for most personsin our society, such as shopping for groceries, dining out,going to movies, and visiting with friends. Results fromlongitudinal studies in Colorado have documented thatrersons receiving supports in smaller community settines(apartments and group homes) are participating in moreactivities than are persons in larger institutional settings.This erovides support to Colorado's ongoing deinstitutionali-zation efforts. Analysis of variance has shown that thedifferences observed between activity levels of personsresiding in community and institutional settings was notattributable to differences in adaptive skill levels of thoseindividuals, but rather due to differences in opportunities.These studies have also identified which support modelsprovide persons with higher activity levels. However, thestudies could not tell us if persons in these support modelswere participating in activities at a level similar to othercitizens in Colorado. Therefore, the COPAR tool has beenapplied to a random sample of 1000 persons in Colorado; theresults of this study (not yet available), will provide a base-line for determining whether we are providing persons withdisabilities opportunities similar to those enjoyed by othercitizens of our state, and if not, where to focus attention.

The COPAR questionnaire also measures the degree towhich a person is involved in making decisions about his orher own life. For example, it examines involvement inchoosing clothing, jobs, roommates, support staff, and howpersonal money is spent. It also looks at whether decisions

are made independently, jointly with others, or are made forthe person. While we found many positive results, there werealso many areas of concern identified through these studies.For instance, the majority of persons in supports.have noinvolvement in decisions concerning their job (or dayservice), the place where they live, support staff, and groceryselection. Encouraging results included significantly higherlevels of choice for persons in community settings than thosein institutional settings (even with functioning levels takeninto account) and the finding that the majority of personswere independently making many decisions.

One of the goals of the Division is to ensure that personsin services are satisfied with the supports they receive andthat they are given opportunities to express their concerns.During the COPAR surveys, persons receiving supports areinterviewed regarding their satisfaction with services and lifeconditions. These surveys serve to answer such questions as:Are persons in certain support models more satisfied withtheir services than others? Are satisfaction levels improvingover time? Do satisfaction levels vary by geographicalservice area, age, gender, ethnic status, or other factors?What would persons like to change about their homes, workor other life situations? While most expressed satisfactionwith services, they also indicated changes they would like tosee. The most frequently expressed concern was lonelinessand a desire for more friends, followed by requests to move(most frequent for persons in institutional settings), the desirefor a different job or work duties, and more involvement indecision-making. These responses provide Colorado with anindication of where to put efforts to benefit the most persons.

The C'OPAR surveys provide Colorado with informationthat assists the State to determine if we are making progresstowards our mission. It allows us to evaluate the relativeeffectiveness of various support models; recognize exem-plary programs and identify programs requiring technicalassistance; demonstrate to funding authorities the positivedifference resulting from expenditure of public funds;determine if individuals being served are satisfied withservices; raise the awareness level of those surveyed regard-ing support outcomes related to the Division's mission; andcollect information on special tareet areas each year. Out-come data is critical to monitor the progress of individualagencies and service settings in meeting contemporarystandards for service quality.

Judy Ruth is Section Chieffor Data Management and LynneStru.vness is Research Analyst, both with the ColoradoDivision for Developmental Disabilities. Denver.

18

Training for Quality 17

Quality Through Direct Service Training in Kansasby Kathleen Olson

Adults with disabilities often receive assistance andsupport from paid nonprofessional staff. As we move fromproviding services in congreeate settings to providingsupport in individualized settings, there is an accompanyingshift in the responsibilities of these staff. The shift involvesmoving from roles of basic caregivers to roles of promotingand supporting independence, integration. productivii andempowerment. Furthermore, in carrying out these expandedroles, direct service staff in individualized settings areworking with less professional supervision. A concertedeffort to train staff for these new roles and responsibilities isneeded if individuals with disabilities are to achieve andmaintain an acceptable quality of life.

The Kansas University Affiliated Program (KUAP) isaddressing the need for direct service staff training through astatewide training network. This network links resourcesfrom agencies across Kansas, including the Kansas MentalHealth and Retardation Services (MH&RS), Kansas Associa-tion of Rehabilitation Facilities, community mental retarda-tion centers, community colleges, and the KUAP. Bycombining fiscal and human resources this network hasaddressed three frequently encountered training challenees:curriculum, relevance, and funding.

The first of these challenges is identifying what to teachand accessing state-of-the-art training resources. This isoften difficult, particularly in rural areas geographicallyseparated from universities. With a training grant from theAdministration on Developmental Disabilities, the KUAPdeveloped An Introduction to Developmental Disabilities, a116-hour competency-based and value-based curriculumproviding an introduction to critical issues in deliveringservices to people with developmental disabilities. Areasaddressed include values, person-centered assessment andplanning, communication, teaching strategies, positivebehavior change, and health. The curriculum objectiveswere developed in consultation with the project advisoryboard consisting of representatives from key agencies inKansas. The curriculum is structured so it can be taught bypersons with moderate levels of expertise in topical areas andwith limited classroom teaching experience.

A second training challenee is the practical problem oftransferring knowledge and skills from the classroom to thework setting. To :le relevant, training should ne understand-able and have practical application to the real-life worksituations of direct service staff. The practicum componentof our curriculum requires direct application of classroomconcepts. On-line supervisors oversee practica, encouragingdiscussion and providing further support for new ideas.

Finally, it is always a challenge to obtain resources fordirect service staff training because adequate funds are rarely

earmarked for it. In Kansas, the MH&RS has funded trainersto teach this curriculum in.community agencies. Currentlythis curriculum is being taught by 32 of the 38 communityagencies. With curriculum and funding available, localagencies are able to tailor the materials to meet individualagency needs and to efficiently use staff time and materials.The use of a common curriculum has enabled some agenciesto share teaching responsibilities by co-teaching or openingup classes to staff from neighboring agencies, thus easing thedemands of staff scheduling for any one agency. Supple-menting resources further, community colleges providesalary and technical assistance to instructors. By teachingthrough community colleges, some staff have also been ableto obtain college credit at tuition-reduced rates.

While instruction through colleges is encouraged.Kansas has chosen not to create a new degree programdirected primarily at career ladder movement to supervisoryand management positions. As we move from program-centered to person-centered approaches, the need for tieredlevels of management should decrease. While professionalsare clearly needed to provide special services in some areas,the greater need is for training in the values and techniquesthat enable staff to provide individualized transdisciplinarysupport. We do not view specific career objectives andformal degrees as a critical component of ensuring qualityservices. We continue to rethink the extent to which we wantto redirect our training efforts from caregiving or manage-ment to value-based training aimed at providing staff withthe skills to empower persons with disabilities. We alsorecognize that there is a need to provide ongoing training fordirect service staff who remain in their current positions.

Although in the early stages, this approach to trainingdirect service staff shows promise in promoting qualityservices on systemic, agency, and staff-consumer levels. Ona systemic level, it has required interagency communicationin identifying common goals and objectives, and in combin-ing resources to reduce duplication of efforts. It is clear thatthe interface of resources across agencies increases the scopeand strength of the training activities of each. With the largenumber of agencies involved, face-to-face interaction oftrainers from different agencies facilitates sharing bestpractices. Within agencies this approach assists communica-tion across levels of staff, solidifies agency policy, andfocuses service delivery. Increased awareness of the valuesof service delivery assists direct service staff to focus on andrefine their roles in supporting and empowering persons withdisabilities, thereby enhancing service quality.

Kathleen Olson is Coordinator of Kansans Educating andEmpowering Persons with Developmental Disabilities,KUAP, Parsons.

1 9

18 Training.* Quality

Improving Quality ThroughParent and Self-Advocate Training

by C'olleen Wieck and Thomas J. Zirpoli

Service delivery systems frequently place persons withdisabilities and their families in passive roles with fewopportunities to express their needs, review alternatives, andmake decisions regarding their own futures. At the very least.these systems have decreased the significance of the family'srole as primary provider in the life of their children, and theconsumer's role as the primary decision maker regardingtheir needs. While self-advocacy may not be possible foreveryone, and should not be a requirement for families toreceive appropriate services, self-advocacy educationprograms are being organized throughout the nation. Part-ners in Policymakine has served as a national model forfamily advocacy and empowerment training since 1987.

Partners in Policymaking is an on-going. federallyfunded grant program under the direction of Minnesota'sGovernor's Planning Council on Developmental Disabilities(GPCDD). T1-,2 program is designed to provide information.training, resources, and skill building in the area of develop-mental disabilities to families of young children with dis-abilities and to consumers with disabilities. The program'sgoals include educating and empowering people so that theymay obtain the best available services.

Program participants are asked to attend eight two-daytraining sessions for a total of sixteen days of leadership andself-advocacy training conducted over an eight month period.Training sessions begin on Fridays, shortly after the noonhour, and conclude on Saturdays. Speakers have includednational experts in developmental disabilities; local, state andnational legislators; and representatives from advocacyorganizations. Session topics :nelude an overview of thehistory of the parent movement and independent livingmovement; community organizing skills; state legislativeissues; integration and quality education; severe physicaldisabilities and technologies; county planning and budgeting;case management; supported employment, supported living,and family supports; and strategies for effective meetings.Examples of skills that are integrated throughout the sessionsinclude successful techniques for advocating for services,meetinu with and providing testimony to public officials, andwhole life planning.

A maximum number of 35 people have been selected toparticipate in the Partners program each year. Participants areselected by a committee consisting of representatives fromthe GPCDD and the community (including parents ofchildren with disabilities and individuals with disabilities).In an effort to assist and encourage participation regardlessof economic status, related travel, meals, lodging, respitecare, and child care expenses arc paid from grant funds.

Evaluation of the Partners program by participants hasbeen overwhelmingly positive. The evaluation of Partnershas three primary components: participant evaluation of eachtraining session using a Likert scale of 1 (Poor) throueh 5(Excellent); completion of a comprehensive evaluation of theoverall program; and longterm follow-up survey datacollected from all participants who are again asked toevaluate the program and provide information regarding theirown advocacy activities since graduation.

To date, overall program evaluation and longtermfollow-up data have been returned by 130 of the 163 gradu-ates from the first five years of the program. Results includethe following:

Sixty-seven percent of the participants rated the programoverall as "Excellent," and 26% "Very Good."

Fifty-seven percent rated the program as "Excellent" inteaching them to become a better advocate, and 3 1 ak ratedit "Very Good."

Sixty-two percent responded "Definitely Yes" when askedif they had secured better services as a result of theirparticipation in the program; 31% said, "Yes. Somewhat."

The majority of participants stated that since graduatingthey had been in contact with national (62%). state (81%).and local (84%) public officials regarding their individualor family needs. Thirty-three percent had testified at apublic hearing, 66% had made at least one presentation toa parent group. 43% had made at least one presentation ata national or state conference, and 73% were serving on acommittee or commission on disability issues.

In addition, many participants have developed supportnetworks and friendships through the program. and someindicate that they now experience greate; confidence, self-esteem, and ability to create changes in the system.

The GPCDD has secured federal grants from the U.S.Department of Health and Human Services to assist otherstates in establishing Partners in Policymaking programs.During the past three years the GPCDD, in collaborationwith several other national and state organizations. hasconducted training academies about the Partners program foirepresentatives from other states. Many of these representa-tives have since initiated similar programs.

Colleen Wieck is Executive Director of the MinnesotaGovernor's Planning Council on Developmental Di.sabilities,St. Paul. Thomas .1. Zirpoli is Associate Pmfessor of SpecialEducation at the University of St. ThomasSt. Paul.

6 0

Training for Quality 19

Parent Case Management Training Promotes Qualityby Marijo McBride

In the past, the management of services for persons withdisabilities was largely left to "professionals." Today, moreand more families and individuals with disabilities want to heinvolved in identifying their own capacities. needs, goals andsupports, which ultimately enhances the quality of theservices and supports that they receive. Parents and adultswith disabilities are increasingly viewed as professionalsworking in partnership with other professionals. Minnesota'sParent Case Management Program has succeeded in empow-erinc2 participants to take the leadership role in case manage-ment for themselves or their child by offering training,ongoing support, and technical assistance.

The Parent Case Management Program was establishedin 1986. Funded by the Minnesota Governor's PlanningCouncil on Developmental Disabilities, the program is basedat the University of Minnesota's Institute on CommunityIntegration. The program began by training parents/guardiansof persons with developmental disabilities and adults withdevelopmental disabilities to take leadership roles in obtain-ing and monitoring the quality ofservices they receive. In 1992, theprogram expanded by implementing atrain-the-trainer model. Today, inaddition to training individuals tomanage the services they receive, theprogram trains parents. persons withdisabilities, and other interested commu-nity members to fill the role of programfacilitators throughout the state. Thesefacilitators return to their communitiesand implement the program.

Through training, support, andfollow-up, the program enables partici-pants to develop knowledge and practiceskills in the followin2 areas:

Case management procedures,responsibilities, and strategies.

Civil rights of persons with develop-mental disabilities.

Data privacy and record maintenance.

State of the art service provision.

Quality indicators.

Inclusion.

Effective use of resources.

Case management rules /regulations.

Transition planning/implementation.

Identification of needs, goals. services and resources.

The program has trained 90 parents and adults withdisabilities to take the leadership role in case management forthe services they receive. Eighty-one percent of recent parentcase management graduates report that as a result of thetraining they are able to more effectively participate in casemanagement for themselves or their children with develop-mental disabilities. An additional 32 individuals have beentrained in the past year to fill the role of facilitators in theircommunities, and are now offering training across the state.An additional measure of the program's success is itsreplication: the parent case management concept is beingimplemented in eight Minnesota counties through a Minne-sota Department of Education grant (see box below).

Marijo McBride is Coordinator of the Parent Case Manage-ment Project, Institute on Community Integration, Universityof Minnesota, Minneapolis.

Parents Help Parents Obtain Quality Services

In our north central Minnesota school district, we found that families whohave children with special needs were consistently feeling isolated andpowerless. They lacked the necessary information and skills to fully participatein obtaining services. Systems oftcn were unfriendly and difficult to access.Because of these issues and concerns, grant funding was obtained to establishthe Parent Partnership Project.

The project's primary purpose is to develop a system by which families ofchildren with disabilities are provided with consistent and accurate informationregarding federal, state, and local agency services; family support options; andfamilies' rights to access and use available services. What makes this programunique is the method by which this is accomplished.

With the exception of the grant manager, all staff, including the regionalparent facilitator, are local parents of children with special needs workingwithin their own communities. The project provides ongoing family follow-up,which is vwed as critical by the families. In addition, the project provides amethod of information dissemination that is adaptable to the unique function-ing and iadividual differences of each participating county service system.

The intent of the project is to build on parent empowerment through useof personal. informative, supportive one-to-one relationships between theparent and parent facilitator. Utilization of parents helping parents providesparticipants with emotional support and understanding from others who "walkthe walk" and "talk the talk" of parents who have children with special needs.

Contributed by Diane Roth, Regional Parent Facilitator. and Kathy Gaffney.Project Manager, Parent Partnership Project, Paul Bunyan Special EdiwationDi.strict, Brainerd, Minnesota.

20 Training for Quality

Action Learning for Quality Improvementby John O'Brien and Connie Lyle O'Brien

Today, more than ever before, people with developmen-tal disabilities rely on the capacity for rapid and fundamentallearning by the people who serve them. New understandingsabout people with disabilities, new approaches to support,and new community opportunities and experiences createenduring gaps between common practice and best practice.As long as there is more to learn about creating opportunitiesfor people with disabilities, quality improvement efforts don'tstop with the attainment of a stable state. Instead, qualityderives from the agency's ability to promote learning throughcollaborative efforts among people with disabilities and theirfamilies and friends, community members, and agency staff.

Because this cycle of learning begins and ends with newunderstandings about people with disabilities as communitymembers, agencies regularly meet the challenge of learningto do significantly different things rather than periodicallyredesigning stable processes. Within the past seven years,agencies offering day services have had to decide how muchto invest in supported employment; agencies that adoptedgroup approaches to supported employment have had todecide how much to reinvest in support to individual jobs:agencies that deployed individual job coaches have had todecide how to reorganize to increase coworker support; andagencies committed to maximizing natural support have hadto rethink their approach to job development and support inorder to increase employer ownership of the entire process ofincluding workers with significant disabilities. At eachdecision point, agencies face changes not only in how, when,and where their staff work, but more fundamentally in thework their staff are doing and the reasons tht-iy are doing it.

Since 1985, Responsive Systems Associates has beendeveloping collaborative approaches to quality improvement.We have worked with almost 100 groups of people on aseries of intensive action learning workshops called Frame-work for Accomplishment. Our shared goal is to developprocesses and concepts useful in reconceptualizing andredesigning services that honor the distinctive contributionsof people with disabilities, their family members and friends,service workers, and other community members. Our processis conversational: instead of assuming that outsiders gain aprivileged view of truth by applying checklists of qualityindicators, we assume that outsiders can contribute to qualityimprovement by gathering different perspectives, and thencreating, sharing, and testing narrative accounts that commu-nicate the quality gap between current reality and a desirablefuture. Our method is to invite people with disabilities, theirfamilies, friends, and service workers to collaborate withself-managed teams whose tasks include: 1) creating anindividual profile of each person's current experiences anddesired future, and determining what is most important now

for each person; 2) describing current service practices fromeach person's point of view and identifying key capacities theagency needs to develop in order to be of better assistance tothe people they support; and 3) identifying constructiveactions that make creative use of personal and agencyresources in each individual situation.

This action learning approach contributes to organiza-tional learning by creating time and space for reflection andcreative problem solving. Beginning with descriptions ofpeople's current experiences, current understandings ofdesirable futures, and current supports, the process increasesawareness of the quality gap by suggesting different ways tothink about and use available resources to better serve theperson. Continuing refinement of this approach suggestsseveral elements of use in the &sign of quality assurance,including:

Include people with disabilities and their families andfriends as full collaborators in the process. A person'sability with language or behavioral challenges seem tomake much less difference to the quality of participationthan the respect with which they are invited into theprocess and with which they are treated within it.

Strengthen the voices of direct service staff. Many haveuntapped good ideas and problem solving skills that willnot emerge if a quality improvement process assumes thatthey are ignorant and untrustworthy.

Make people accountable for clear judgments about thequality of current experience and options for improvement.

Clarify the purpose of the work being done. The programasks people to explore three purposes for services to peoplewho require long term assistance: 1) actively help people '""--

discover and move toward a desirable personal future; 2)offer necessary assistance in ways that support positiveexperiences of community memberships; and 3) challengeand build the competence of community settings.

Challenge agency staff to improve their abilities to listen topeople with disabilities, develop community opportunities,assist people to make and keep positive community con-nections, and be a safeguard for people in difficult times.

Like any approach that constructs a temporary socialsystem to accelerate learning, the effectiveness of the Frame-work process depends on people's abilities to move its les-sons from the stage of reflection into action. This has provenparticularly difficult when closing the quality gap calls onagencies to transform the ways they work and are managed.

John and Connie Lyle O'Brien are Responsive SystonsAssociates, Litvonia, Georgia.

22

Resources 21

Resources

Outcome-Based Performance Measures. (1993) By theAccreditation Council on Services for People withDisabilities. A manual listing the 30 outcomes identifiedby people with disabilities that form the basis for theAccreditation Council's quality enhancement andaccreditation program. Available from the AccreditationCouncil on Services for People with Disabilities, 8100Professional Place, Suite 204, Landover. MD 20785-2225

(301) 459-2225.

Quality Assurance for Individuals with DevelopmentalDisabilities: It's Everybody's Business. (1990) By V.Bradley and H. Bersani, Jr. Published by Paul H. Brookes,Baltimore. A book in which over two dozen writersdiscuss quality assurance for persons with developmentaldisabilities from the perspectives of consumers, families,advocates, government, and others.

Continuous Quality Improvement in Oregon's Pro-grams for People with Developmental Disabilities.(1992) By M. Brodsky and D. Wilson. A publicationdescribine the application of continuous quality improve-ment approaches to programs for persons with develop-mental disabilities in Oregon. Available from ParadigmSystems, P.O. Box 967, Saiem, OR 97308-0967 (503)363-8609.

Standards Manual for Organizations Serving Peoplewith Disabilities. (1990) By the Commission on Accredi-lation of Rehabilitation Facilities. A manual containingstandards to assist provider agencies to plan and developservices, train staff, evaluate and improve programs, andprepare for a survey leading to voluntary accreditation.Available from the Commission on Accreditation ofRehabilitation Facilities, 101 North Wilmot Road, Suite500, Tucson AZ 85711 (602) 748-1212.

Quality is Free: The Art of Making Quality Certain.(1980) By P. Crosby. Published by Pengui., Books USA,New York. A book discussing managing quality in waysthat are practical, productive and profitable.

Down Stairs That Are Never Our Own: SupportingPeople with Developmental Disabilities in Their OwnHome. (1991 ) By J. O'Brien. A publication addressingthe significance of choosing and controlling one's homeenvironment from the perspective of persons withdevelopmental disabilities. Available from the NationalAssociation of State Directors of Developmental Disabili-ties Services, Inc., 113 Oronoco Street, Alexandria, VA22314 (703) 683-4202.

A Summary of States' Efforts to Positively Affect theQuality of Medicaid Home and Community-BasedServices for Persons with Mental Retardation andRelated Conditions (Report #34). (1991) By R. Proutyand K. Lakin. A report describing findings of a nationalsurvey of efforts by states to assure and enhance servicequality for persons with mental retardation and relatedconditions. Available from the Publications Office,Institute on Community Integration, University ofMinnesota, 109 Pattee Hall, 150 Pillsbury Drive SE,Minneapolis, MN 55455 (612) 624-4512.

Supported Living: New Directions in Services toPeople with Developmental Disabilities. (1990) By G.Smith. A publication reporting and analyzing emergingtrends in supported living for persons with developmentaldisabilities. Available from the National Association ofState Directors of Developmental Disabilities Services,Inc., 113 Oronoco Street. Alexandria, VA 22314 (703)683-4202.

Supporting People with Severe Reputations in theCommunity. By M. Smull and S. Harrison. (1992) Ahandbook discussing, with practical examples, howpeople receive severe reputations, how to plan with theindividual for community services, how to recruit anddevelop the supports needed to implement the plan andhow to avoid the most common abuses and perversions inproviding supports. Available from the National Associa-tion of State Directors of Developmental DisabilitiesServices, Inc., 113 Oronoco Street, Alexandria, VA 22314

(703) 683-4202.

An Introduction to Developmental Disabilities. (1993)A 116-hour competency-based and value-based curricu-lum for direct service staff. Available from KathleenOlson, KUAP at Parsons, Box 738, Parsons, KS 67357(316) 421-6550.

New in Summer 1993 . . .

Reinventing Quality: Improving Services for Personswith Mental Retardation and Related Conditions.(1993) By E. Blake, T. Mangan, B. Prouty, and K.C.Lakin. A sourcebook describing over 50 innovativeprograms to assure and enhance service quality forpersons with developmental disabilities. Available fromPublications Office, Institute on Community Integration,University of Minnesota, 109 Pauee Hall, 150 PillsburyDrive SE, Minneapolis, MN 55455 (612) 624-4512.

22 Quality Assurance

Redesign, continued from page 1

Articulating the Value Base

The first task in redesigning quality assurance is todefine quality. Philip Crosby, in his book, Quality is Free:The Art of Making Quality Certain, tells us that quality is"conformance to requirements; it is precisely measurable." Iused to think that definition made sense in manufacturingbecause General Motors could make cars conforming to itsstandards. The problem was that not enough people wantedthe cars. There is obviously a dimension to quality thatapplies to manufacturing and even more so to the humanservice field, which is that quality is what the customerwants. Building a Cadillac that General Motors thinks is aquality car is irrelevant unless the customer is willing to payfor it.

So if an essential compormt of quality is meeting thecustomer's expectations, who is the customer? In the servicesystem as it has existed to date, the customer primarily hasbeen the government agency that certifies, operates or fundsthe service system. Providers have had to satisfy theregulators and funders, not the people they serve. Andgovernment decisions about whether to continue funding andoperating programs have depended not just on compliancewith standards, but on a host of other considerations, such asthe effect of regulatory actions on labor unions and theworkforce, alternatives that may be available to meet theneeds of current program participants, the economic impactof the program in the community, and the political intereststhat a provider could bring to bear. However, when agencieswrite mission statements and policy documents, it is notuncommon to see such documents espouse lofty ideals suchas "empowerment." "individual choice," and "inclusion," andremain virtually silent about these political and self-interestforces that in reality shape much of the decision-making.

A significant challenge that must be confronted on thisjourney to a new world of person-centered, preference-driven service/support systems is answering the followingquestions: (a) how can people be empowered unless theyhave effective control over the money being spent on theirsupport, and can choose to spend it differently; (b) how dowe truly make the person with a disability the customerwhose expectations must be met as an essential componentof quality; and (c) how does the current provider-drivensystem, with its need for predictable budgets and revenues,accommodate to a world where the negotiations will occurnz)t with a single state official for "beds" and "slots," butwith dozens of consumers with their own ideas of what theywant and are willing to pay for? This task requires confront-ing the question of whose expectations must be satisfied, andhow much choice will the person being served have.

Another task in redefining quality assurance is to makechoices real. Today the buzz word in tvIr field is "choice"for individuals with disabilities. It is a sound and important

concept in public policy that takes more general notionsabout consume: participation to the next step of real empow-erment. But how well has consumer participation worked inpractice in shaping individualized education plans, individualhabilitation plans, individualized written rehabilitation plans,discharge plans, and so on?

Often two common and convenient practices emerge.First, surrogates have often been found to speak for theconsumer. In some cases, they have been families andguardians, in others "correspondents," and in still others,agency staff. Sometimes this reliance on surrogates hasworked reasonably well, but on many occasions it has alsoraised a real question about whose voice was being heard andwhose interests were being expressed and advanced. Second,if what the consumer wanted was in.,onvenient or requireddoing things in unfamiliar ways, it was often ignored. Theevidence lies in the number of children with disabilities whoare still segregated in their schooling 20 years after theenactment of P.L. 94-142, despite the clear preference oftheir parents that they be integrated with other children; inthe thousands of adults still segregated in sheltered work-shops toiling endlessly at dull, repetitive tasks when manyclearly want more normal work opportunities; and in thethousands of people with disabilities who are forced to livewith other people not of their choosing when the only thingthey have in common is a label.

One of the most significant challenges that must befaced is making choice real for people with disabilities.There are many dimensions to this challenge, including whatis put on the menu, and how to adapt rigid governmental andbureaucratic systems to price and pay for the items on themenu. But the aspect of this challenge that will require themost profound change is truly listening to the consumer andeliciting authentic choices. We have tended to jump on thebandwagon supporting the notion of choice without ad-equately thinking through how substantial a change inbehavior this is going to require from all of us.

Designing a Quality Assurance System

With this value-based foundation firmly in place, the keytasks for redesigning quality assurance systems are readilyidentified, although their implementation may challenge theculture of some organizations:

Establish a careful process for deciding whom to entrustwith the welfare of vulnerable people.

Instill curiosity about how well the values, plans, andpolicies are actually being implemented.

Inculcate a passion for the truth and willingness to hear it,and give license to all, especially consumers, to speak it.

Emphasize spending time listening to and seeing the realcondition of people's lives through their eyes rather than onexamining provider processes alone.

2 4

Quality Assurance 23

Teach and spread success by calling attention to the placeswhere you find it, and take prompt and effective correctiveor enforcement action against deficient performance.

Rediscover common sense, and focus on improving thequality of services rather than extracting plans for im-provement.

Implicit in these principles is the retention of traditionalquality assurance functions such as licensing and certifica-tion, and the receipt, investigation, and review of complaintsand incidents. However, these principles may require somesystems to significantly alter the manner in which they dealwith such complaints and incidents, and licensing andcertification decisions.

Perhaps the most important challenge in redesigningquality assurance is finding individuals and agencies throughwhom public policy will be executed. In most states,community services are largely provided through contractswith private agencies, usually not-for-profits, but notexclusively so. One of the key quality assurance functions isdeveloping a careful process of investigating the characterand competence of the board members, officers, and keyemployees of potential licensees.

For some, provision of services and supports is abusiness and there is a continual tension between profit andcare. Other providers may simply lack the basic competenceto meet the needs of the people they serve, or lack thecommitment to the values described earlier. After-the-factmonitoring may identify some of these providers, but usuallyonly after they have inflicted substantial harm on vulnerablepeople. Thus, one of the most essential quality assurancesafeguards is to use an examination of character and compe-tence of licensees to ensure that we do not entrust any agencyor provider with responsibility for services and supportsunless we are convinced, after a careful inquiry, that theyembrace these values and have a commitment to inculcatethem in their staff. Once licensed, quality assurance systemsshould periodically and randomly audit the expenditures ofagencies to determine how public money intended forservices and supports is actually being spent. Few yardsticksyield as clear an indication of a provider's character thandecisions to divert public money to personal gain.

The foundation for an effective quality assurance systemthat incorporates all the principles and traits described thusfar is a genuine desire of agency leadership to know theplain, unvarnished truth about what is going on in the servicesystem, and a willingness to follow the truth wherever itleads. This may seem such an elementary ingredient that it ishardly worth discussion, yet it is surprisingly absent in manyquality assurance systems. In part, this is because the servicesystems have not been honest in articulating v, lues and theydare not have quality assurance systems that regularlyconfront them with this dishonesty.

It is thus by design rather than by accident that it liesbeyond thc purview of most quality assurance systems to

question what the ultimate objectives ought to be forparticular clients and whether they are achievable at all in theservice system as designed. It is also by design rather thanby accident that, in their attempts to assure quality, qualityassurance systems have rarely examined client satisfaction orclient choice as a component of quality. Quality assurancesystems were never designed to ask these questions about theunderlying values that guide everything we do. Some so-called quality assurance activities, like risk management,have become the very antithesis of quality assurance. Asthese activities serve primarily to limit legal liability andprovide "plausible deniability," they encourage programs toavoid confronting the reality of problems that exist. Andwithout that, programs are often incapable of assuring basicsafety, let alone aspiring to genuine quality. A qualityassurance system that regularly holds up a mirror and forcesrecognition of the reality that exists can be a powerful tool toreinforce, disseminate, and replicate exemplary performance;it can be equally potent in identifying, curbing, and deterringabysmal performance.

For a quality assurance system to realize this potential,its work product must be made public, much in the same waythat the results of health department inspections of restau-rants are made public. Both the rewards of a positive surveyand the opprobrium of a negative one are likely to be feltmore keenly, reinforcing the potence of the quality assuranceprocess as a behavior modification device for the servicesystem. If quality assurance reports are to have this effect,they must also be written in plain English. Agency staff andother readers can clearly understand a report that says: ''Thekitchen is filthy, and the dishes are rood encrusted. Cleanthem." On the other hand, a report that says: "Health CodeSec. 303.4 subpar (a) (ii) is violated. Conditions of participa-tion not met," is far less clear.

With people of reputable character and competenceinculcating clear values and expectations in all staff, it is farless important to develop detailed regulations governingwater temperature, fiber in the diet. and square footage tomonitor against. The new flexibility that exists in manygovernment funding programs permits a more minimalistapproach to regulation that relies heavily on common senseand professional judgement and less on detailed regulatoryspecifications. After two decades of experience with theexisting regulatory system, it is abundantly plain that wehave spent far too much time encouraging people to look atthe ferns on the forest floor and have missed the forest itself.We need to find a way to replace fear-based monitoring,citations of deficiencies, and plans of correction with morecollegial, supportive, and assisting means of improvingconditions that affect the every day lives of the people beingserved. And in looking for ways to enhance quality for thepeople being served, wc ought not to overlook the obviousand fail to ask them what they want.

Clarence Sundram is Chair of the New York State Commis-sion on Quality of Care for the Mentally Disabled, Albany.

5

In this issue . . .

Redesigning Quality Assurance

Quality Assurance, Quality Enhancement

Challenging Tradition: Measuring Quality by Outcomes

Balancing Inclusion, Choice, and Protection

Quality in Community Residences: Subcommittee Report

Quality Enhancement: A Commitment in PA

Quality Assurance for Quality of Life in UT

Continuous Quality Improvement in OR

Reorientation to Quality Assurance in NY

Service Enhancement Through Self-Examination in CT

Performance-Based Contracting in MN

Consumer Monitoring of Services in OK

Gathering Quality-Relevant Data in CO

Quality Through Direct Service Training in KS

Improving Quality Through Parent/Self-Advocate Training

Parent Case Management Training Promotes Quality

Action Learning for Quality Improvement

Resources

IMPACT: Feature Issue on QualityAssurance June 1993

Managing Editor: Vicki GaylordIssue Editors: Charlie Lakin, BobProuty, Gary Smith

IMPACT is published quarterly by theResearch and Training Center on ResidentialServices and Community Living and theInstitute on Community Integration (aUniversity Affiliated Program), in the Collegeof Education. University of Minnesota. Thispublication was supported, in part, by Grant# H133B80048 from the National Institute onDisability and Rehabilitation Research, U.S.Department of Education; and by Grant#90DD0180 from the Administration onDevelopmental Disabilities, U.S. Departmentof Health and Human Services. The opinionsexpressed are those of the authors and do notnecessarily reflect the views of the Center,Institute, University of Minnesota, or theirfunding sources.

The mission of the Center and Institute is toimprove the quality and community orientationof professional services and social supportsavailable to individuals with disabilities andtheir families. Inquiries about the Center,Institute or IMPACT can be directed to:Institute on Community Integration, 6Pattee Hall, University of Minnesota, 150Pillsbury Drive SE, Minneapolis, MN55455 (612) 6244848. IMPACT is availablein alternative formats upon request.

llie University of Mitmesota is anequal opportunity employer and educator.

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