Quality of Life and Quality Assurance

Note: This article has been excerpted without permission from Chapter 9 Quality of Life and Quality Assurance by Robert Schalock in Quality of Life in Health Promotion and Rehabilitation (Sage, 1996), edited by Rebecca Renwick, Ivan Brown and Mark Nagler.


Quality Assurance, Then and Now. Historically, quality assurance methods have involved certification, licensure, accreditation, citizen monitoring, or a combination. We have begun to rethink the purpose and process of quality assurance in light of the quality revolution. At least three phenomena are significantly affecting this reevaluation:

These three phenomena have resulted in a significant reformulation of how quality assurance should be viewed and implemented. In addressing this reformulation, I would like to suggest that we consider the concept of a person-referenced quality assurance system. What would such a system look like? [It has] five characteristics:

1. It is based on a comprehensive framework.

2. It begins with the end (that is, person-referenced outcomes) in mind.

3. It considers quality assurance as a form of internal program evaluation.

4. It is a shared process involving consumers, providers, and regulatory bodies.

5. It results in quantitative information that can be aggregated for multiple uses.

Comprehensive Framework. A comprehensive client-referenced quality assurance system should focus on three major program-related factors: desired person-referenced outcomes (e.g. independence, productivity, community integration, and health and wellness), program structure (the focus here is primarily on the program's mission statement and conversion activities), and program process (the focus of looking at program process is to continue emphasizing the critical nature of the quality enhancement and quality management techniques).

Begin with the End in Mind. Consistent with the current paradigm shift toward person-centered planning and service delivery, the selection of these desired outcomes is made primarily by consumers and their advocates.

Internal Program Evaluation. Quality assurance can be considered a type of internal program evaluation that uses a decision-making model and focuses on self-monitoring and self-evaluation.

Shared Process. Consumer empowerment and equity represent the essence of the paradigm shift currently affecting rehabilitation and health promotion services. Thus a reformulation of quality assurance should incorporate this change.

Using the Data. The specific use will depend on a number of factors, such as whether or not the outcomes meet the needs and expectations of the consumers and the capacity of the program to change. For example, if the person-referenced outcomes are less than optimal, the key players can sit down and problem solve as to how specific quality enhancement techniques can be implemented.

Conclusion. In summary, what I have suggest[ed] [is] that the concept of quality of life is the overriding principle of the l990s and will continue to influence significantly rehabilitation and community health programs. If this is true, then it is essential that (re)habilitation and community health programs be guided by quality of life models that provide a framework for service provision, quality assurance, and program evaluation. Furthermore, we should embrace a quality assurance system that is consumer-referenced and results in quantitative data that can be used to enhance quality, including one's quality of life.


Art or Science?

Certain ideas emerge as important. It has been argued that quality of life measures can include both subjective and objective measures. There is a sense, however, in which the subjective components may be treated as objective data. Such data can be obtained by different assessors, and measures can be repeated and tested for reliability and validity. This is no different from a wide range of questionnaires that have been employed over the past 50 years. It is the meaning that we, the observers, attach to the data that makes them subjective or objective. Wolfensberger argued against quality of life measures because, being subjective, they are not scientific. This is to misunderstand the basis on which most quality of life data are collected and conclusions that are made from such statements. The individuals make statements about themselves and their environments. This is objective. There is no claim that such views match external events or measures. Indeed, the discrepancies between the former and the latter may be very important, and personal statement may be primary because it links to self-image and motivation.

Note: This article has been excerpted without permission from Chapter 18 People with Developmental Disabilities by Roy Brown in Quality of Life in Health Promotion and Rehabilitation (Sage, 1996), edited by Rebecca Renwick, Ivan Brown and Mark Nagler.


Looking at Service Quality: A Self-Assessment


Introduction. While working on Looking at Life Quality, a companion piece titled Looking at Service Quality was developed as well. This handbook offers a way to identify opportunitiies for improving service quality. The self-assessment described below was completed by an agency within the first six months of operation of a licensed living arrangement for three adults. Names and support service characteristics have been altered to protect confidentiality.



Things You Know About Your Services A basic principle in the founding of Altamira House was to honor individual choice. Bob communicates with words to express his choice, while Jack and Cheryl show us with their body language and behavior. At this early stage, honoring their choices is providing us with many challenges particularly in the areas of health. For example, Jack chooses often and has had a rapid weight gain. Bob has chosen to stay up later than in the past, and his temperament has been adversely affected. Bob has also had difficulty in deciding what to eat and has lost some weight. We are still exploring ways to facilitate Cheryl's choice-making. She tends to fill any unstructured time with some challenging behaviors.

Things That Need Follow-Up We are committed to supporting Jack, Bob, and Cheryl in making healthy choices. All three have significantly limited communication skills, but we are exploring ways to help them to communicate their choices better. Altamira House is composed of family members and close friends who know all three individuals very well and who are committed to supporting them and to speak for them when necessary.



Things You Know About Your Services Jack, Bob, Cheryl are all regularly in contact with their families. Their companions and house mates are dedicated to including them in their social lives. They have many opportunities to meet people, however, limited communication skills require facilitation in order for them to develop and maintain friendships.

Things That Need Follow-Up We need to continue to provide opportunities for each to develop friendships. For example, we need to explore the availability of community clubs and groups so that each could have regular contacts with other people and so that others could get to know them. Possibilities would be based on individual interests and might include service clubs, bike clubs, running groups, or health clubs.



Things You Know About Your Services Jack, Bob, Cheryl live in a typical neighborhood home and regularly participate with support in the daily activities of shopping, banking, eating out. Each has his/her own room and own belongings, and each has a key to the home. Altamira House is dedicated to facilitating their inclusion in regular community life by providing whatever supports are necessary to do so. Cheryl is in her final months of public school. Both Bob and Jack are in day programs with limited vocational opportunities.

Things That Need Follow-Up We need to support efforts for exploring job interests. We will continue to help them express their activity interests and to find ways for them to enjoy these interests in the community.



Things You Know About Your Services The home contains required fire safety equipment and everyone has passed fire drill training. Support companions are available to assist individuals in case of an emergency. Appropriate modifications have been made to make the home accessible for Bob by adding the necessary railings at entrances and in the bathroom. Medications are properly stored and documented.

Things That Need Follow-Up Nothing at this time.



Things You Know About Your Services Bob is going to a Self-Advocacy Conference. Cheryl attends Adult Decision-Making classes. Cheryl and Jack have conservators to help them exercise their rights. All are free from abuse and neglect and appear to be healthy. Cheryl and Jack receive SSI and Medicaid. Bob's ongoing negotiations for SSI and medical benefits are being supported by Altamira House.

Things That Need Follow-Up Support needs to be provided to assist all three in making choices that provide health and well-being. Bob needs to be taken to the dentist. Jack is scheduled for dental surgery and his parents will assist in this process.



Things You Know About Your Services Jack, Bob, Cheryl moved into their own home this year, a goal established through a series of future planning meetings held over a year ago. Jack expresses his happiness with a lot of smiles and by taking the initiative in going out on walks, taking unscheduled showers, initiating purchases, and doing some chores. Cheryl has tried to answer the phone, appears happy, tried to make her own bed unprompted, and gets drinks of water unprompted. Bob calls his friends and initiates outings.

Things That Need Follow-Up All three need additional and continual assistance in realizing their personal goals.


A Plan of Action for Things That Need Follow-Up

What you want to achieve We want Roger, Bob, Cheryl to be able to communicate their wants, needs and preferences in ways that we can understand.

What action needs to happen We need to explore more technology and techniques of communications which would be appropriate for each.

Who can help Our board, consultants, and the Center for Adaptive Technology are all possible sources for help.


What you want to achieve We want to expand individual relationships and friendships for all three individuals.

What action needs to happen Explore activities and clubs available to the three and support them in joining those activities for which they express a preference.

Who can help House mates, companions and the board.


What you want to achieve Support Roger, Bob, Cheryl in making healthy choices.

What action needs to happen Structure specific activities which lead to making choices and provide the supports necessary. Examples: Provide the necessary support for specific activities such as bicycle riding.

Who can help Board, house mates, consultants.