Signs of Change in Quality Enhancement

Excerpted from Chapter 1 of Quality Enhancement in Developmental Disabilities: Challenges and Opportunities in a Changing World, edited by Valerie J. Bradley, M.A., & Madeleine Kimmich, D.S.W.

Copyright © 2003 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

That quality enhancement “gyroscopes” are undergoing change is apparent from shifts in assumptions, expectations, and approaches to monitoring. A review of these changes reveals the subtle and not-so-subtle influences that are reshaping the configuration of public DD systems and the concrete manifestations of such shifts.

Changes Rooted in Community Norms

Quality benchmarks are no longer pegged to institutional care. In other words, success is more than just creating a system that was better than a state facility — a norm that was present in the deinstitutionalization studies of the 1970s and 1980s (e.g., Conroy & Bradley, 1984). The bar has been set much higher, and there is some momentum to compare outcomes not just with the outcomes of other people with disabilities but also with those of members of the general population (see Chapter 12). Nerney made an eloquent plea for such an approach:

Public policy leaders need to adopt a different definition of quality. This new definition must rest on expectations for individuals with disabilities that mirror the expectations all other members of this society have for themselves. Current quality enhancement systems are normed on disability programs and services; rather, quality should be normed on aspirations that all human beings have — not on satisfaction with human service environments and interventions. (2001, p. 3)

Changing Expectations

Another factor shaping emerging quality norms is the change in the expectations of the current generation of families and people with disabilities. One of these changes has to do with the advent of self-determination and consumer-directed services as priorities among self-advocates and young family members. An evaluation (Agosta, Silver, Heaviland, & Bradley, 2000) of the Robert Wood Johnson Foundation self-determination projects included a component aimed at the perceptions and involvement of self-advocates in the demonstrations. When asked what self-determination meant, some of the responses from people with disabilities included

• I am a person like all people: My life is my own.
  
  
• I speak for myself. I speak up. I stick up for myself.
  
  
• I make my own choices.
  
  
• I am the boss of my own life.
  
  
• I make my decisions in my own life.
  
  
• I do for myself… and not depend on others so much. (p. 4)

These strong statements telegraph a change in the locus of power vis-à-vis the dominance of professional judgment. The sentiments also indicate that quality is not a standardized commodity but a flexible notion heavily influenced by the person receiving services and his or her family and friends.

Movement Away from Prescriptive Standards

In line with changes in the service system and assumptions about how services and supports should be provided, several states have revamped their licensing and certification processes to reflect a more person-centered focus. Massachusetts, for instance, has combined its licensing provisions with survey and certification and developed the Quality Enhancement Survey Tool (QUEST) (see Case Study 1). QUEST eliminates some of the more rigid elements of licensing including such things as stair height and staff - client ratios. In their place, the state developed an approach that relies heavily on the experience of people receiving supports. Other states — such as New Hampshire, Vermont, Colorado, and Oregon — followed a similar path.

Emphasis on Enhancement

Most of the energy expended in the DD field since the 1970s has gone into expanding community services and relocating individuals from institutions to community homes and supports. Many states are now all but out of the custodial care business (e.g., Vermont, New Hampshire, Minnesota, New Mexico, Rhode Island), and some have turned their attention to building the capacity and stability of community systems.

Dissemination of Information

The number of stakeholders concerned about services to people with DD in the public sector has grown as community services and supports have proliferated. This fact, paired with the move to empower families and people with disabilities, has put increasing pressure on state agencies to provide information about the performance of the service system in a timely and accessible fashion. Some states, such as Michigan, have for several years published “report cards” on the performance of their community mental health centers. Wyoming routinely publishes the results of its licensing reviews on the state’s web site. Other states, such as Colorado, have made consumer outcome data available statewide. These steps are the beginning of an effort to make systems more transparent and to respond to the increased need for information by families and people with disabilities making choices among providers.

Involvement of People with Disabilities and Their Families

The self-advocacy movement coupled with an emphasis on choice and self-determination has spawned a more “democratic” quality enhancement system in many states. Whereas quality enhancement has traditionally been the purview of state bureaucrats and accreditation entities, people with disabilities and their families have become increasingly involved in performance oversight. Specifically, consumers have been involved in the design of consumer surveys in Maryland (see Chapter 8) and New Hampshire, and people with disabilities and their families are part of independent monitoring teams in Pennsylvania (see Chapter 9).