Designing A Comprehensive Quality Assurance System for California's Developmental Services:
A Background Paper


What We Were Asked to Do. Through a contract with the Department of Developmental Services, we were asked to:

Develop a way to look at the outcomes of services used by people with developmental disabilities and their families in California;

Figure out a way to fit it into the developmental service system; and,

To go out and try it out.

What We've Been Doing So Far. Since July, 1993, we've been busy doing a lot of the background work needed for this project. During that time, we have:

Asked other states if they look at services for their quality and if so, how they do it (Potential Conflicts of Interest in State Department of Developmental Services' Quality Assurance Efforts: A Survey Summary);

Looked at how different state and federal agencies look at developmental services in California (A Summary of Selected Quality Assurance Regulations, Legislation, and Activities in the California Developmental Services System Part One: Overview and Part Two: Analysis By Major Criteria);

Asked people how they could tell a quality service and what quality means to them (Looking At Quality Services: A Survey Summary);

Developed a paper (not a contract requirement) on all of the ideas we've read about
(Assuring Quality Services for Californians with Developmental Disabilities: Some Thoughts)

Met with the Quality Assurance Advisory Group to hear the thoughts of people with developmental disabilities, families, advocates, regional centers, area boards, service providers and other professionals and to bring their ideas into this work.

What We Think We've Learned. From the work above, we have learned that:

Assuring quality services means doing a lot of things (e.g., technical assistance, education and information sharing);

It means looking at some basic things like health and safety and it also means looking at life quality and asking people about their quality of life;

Looking at services means looking at the outcomes of those services for people who use them;

Important outcomes seem to be things like community participation, friendships, and service satisfaction;

The best way to find out about these outcomes is to ask people who receive services, observe if you can't ask, or talk to families and friends if you can't ask or observe;

The best way to make sure that we have quality services is to get all of the service users involved;

A lack of resources (e.g., time, training, money, staff) are the big barriers to looking at valued outcomes.

From our analysis of regulations, standards and activities we have also learned that:

Quality assurance at this time in California means looking mostly at things like health and safety. About 79% of all of the standards and regulations we reviewed are focused on inputs and processes (e.g., health and safety, staff, individual program planning and rights);

While valued outcomes (e.g., relationships, community participation, service satisfaction) have been infused into the Lanterman Act, they have not made their way into regulations;

Service monitoring is heavily focused on living arrangements, whether congregate care, group homes or supported living;

Federal regulations (and state regulations influenced by them) are the most wanting in terms of looking at valued outcomes; and,

There is at best an insignificant focus on quality enhancement or improving service quality.

Considerations. There have been many elements to consider in developing a design of a comprehensive system. We have been sensitive to balancing the requirements of our contract with what we have learned, recent changes in the Lanterman Act brought about by Senate Bill 1383 and the terms of the Coffelt agreement. Those elements have led us to understand that this system must:

Focus on the individual;
Look at valued outcomes;
Include persons served, families, and community members;
Rely on a variety of activities;
Share responsibility;
Facilitate collaboration; and
Emphasize service enhancement as well as sanctions.

The quality assurance that we outlined stresses:

Accountability and Choice. Measures of self-determination, choice and service satisfaction will provide the key to looking at successful outcomes for people with developmental disabilities.

Local Control and State Direction. A locally determined quality service plan will provide a focus on differing community needs.

Does it Make the Grade? That's for others to decide, but we believe that it: Implements the 'common threads' of the Coffelt settlement and Senate Bill 1383 by focusing on the individual, valued outcomes, the person-centered planning process, sharing the power through local control and collaboration;

Incorporates what we've learned from others about using a variety of activities, asking the individual, focusing on service enhancement and including persons served, families, and community members;

Relies on the checks and balances already built into the Lanterman Act;

Fits into the current developmental services system, but is based on the future with room to grow; and, most important,

Meets the best practice criteria quality assurance is everyone's business.

A Context of Change

Changes in Federal Law. The passage of the Americans with Disabilities Act, revisions to the Individuals with Disabilities Act and the reauthorization of the Rehabilitation Act signal a changing federal landscape. These laws of the land now contain language which mandates that people with disabilities and their families play a major role in determining their own service needs.

A Change in State Law. Senate Bill 1383 has created significant changes in the Lanterman Developmental Disabilities Services Act. Changes which will move the developmental system in California towards an individualized support service model based on choice, community participation and self-determination.

A Court Mandate. The recent Coffelt settlement provides a blueprint for implementing these legislative changes. The two major components of this court directed blueprint are: 1) a major restructuring of the individual program planning process; and 2) the development of a quality assurance system which focuses on outcomes for people served. While outside the scope of this contract, changes in the individual planning process will dramatically affect the quality assurance system.

Changing the Way We Plan Services
Based on Excerpts from Supporting People with Severe Reputations in the Community by Michael Smull and Susan Burke Harrison (Baltimore, Maryland, 1992).

Starting With The Individual - Listening To The Individual.
Most human service systems develop programs and put people into them. [Senate Bill 1383 requires] a system that starts with individuals and builds services around them. [To do this] people need to be provided with settings where their essential lifestyle choices are met. If this can be done, the lives of people with disabilities will improve dramatically and the problems of the service system will be significantly reduced. People who are getting what they are "asking for" clearly have a better quality of life then those who do not.

Shifting Our Investments. The process of supporting people in lifestyles of their own choosing requires that we shift our "investments" in service development. We typically spend relatively little time in individual planning and more time in locating or developing a program. This [shift] requires that we spend more time in planning. It will also require extra time in helping providers develop services around individuals and in developing a flexible array of supports.

[Person Centered]. The first part of this process focuses on the individual. Any planning that begins with the individual rather than the program is referred to as "person centered planning". [This method of] planning helps people discover their choices and then helps them to have those choices honored. There is no bias for or against a type of service or a predetermination of the number of people who should live together. It is focused on individuals and what they value.

Honoring Choice. In the current system of service, complete control over all essential choices is in the hands of the professionals. The outcome of this planning process is to rebalance the locus of control. The service system must continue to assure reasonable protection of the individual [when needed], while supporting substantial freedom. People who cannot articulate where they would wish to live or who they wish to live with can tell us of their preferences through their behavior. Those who tell us what they think we want to hear can learn to put forward their own wishes. We will need to assist these individuals to discover what their informed choices are. They will need encouragement and careful exposure to relevant life experiences. We have found that as people gain power over their lives, they often need less control or protection.

Neither the process nor the outcome eliminates the need for skilled professionals. People will still need support for their behavioral, psychiatric, and medical needs. People will still want to learn new skills and will need good teachers. We are not discarding all of our professional skills, we are simply putting them in their proper position. Our skills should be used to help people in achieving the lifestyles of their own choosing. They should not determine that lifestyle.

The greatest challenge in supporting people with disabilities is finding the balance for each individual. A balance between:

Freedom of choice and the safety and health of the individual;
Personal liberty and the expectations of society to conform to social norms, and
Encouraging individuals while avoiding coercion.

Because the balance achieved needs to take into account the circumstances, the core values, and the complexities of each individual, [like an individual program plan] it is different for each individual.

Changing the Way We Look At Services
Excerpts from a speech on the Coffelt Decision and Quality Assurance presented by Bill Allen to the Area IV Board on Developmental Disabilities, January, 1994.

Our Current Service System. For better or for worse, for richer or for poorer, we have developed over the last 25 years, a managed care system of services for people with developmental disabilities and their families in California. A system that seeks to provide clean, safe, healthy and stimulating living, education and working places for people 24 hours a day. A system which does not, however, provide a lot of choice or option for people who must use it.

A Brief History of Quality Assurance. Now, if you want to improve those places you can always establish some standards and write some procedures, go out and look at those places, ask some questions and then (depending on what you find out) request or demand some changes which will probably make them cleaner, safer, more healthy and stimulating. This, in the broadest possible sense, is what we've referred to as quality assurance.

Thirty years ago, if we asked questions at all they might have been Do people have a place to live? Do people have three meals a day? Twenty years ago, those questions became a little more refined like Do people get bathed on a frequent enough basis to avoid unhealthy skin conditions? Ten years ago, those questions got even more specific around something we started calling active treatment like Are people assessed by a standardized functional assessment? Are treatment plans based on those assessments?

So, over time, we're getting better at asking questions and we've probably made things a little better for people using those services each time. Now, we're all quite excited about a new set of questions. These are questions like Do you have enough friends? Do you get to see them enough? Did you get to choose which clean, safe, healthy environment you want to live in and with whom?

Some New Questions. These 'new' questions will certainly help move things along. In fact, these questions have already been developed or are being developed and can be readily adapted or adopted. However, changing the questions doesn't change much of anything at all unless all you want is a better managed care system. It will help us look more at how services affect individuals, that can only be good. It may provide greater choices within the service system as we know it and that sounds good! However, it will likely do little more.

It will not transform a system of managed care into a system of individualized supports. It will not lead to a full implementation of the revised Lanterman Act or the Coffelt lawsuit. It will not make cars into airplanes. That's not bad, that's not good- it just is!

Something Different. If we intend to create a system of individualized supports, we will need to do something different about the way we look at those support services. On an individual level, we'll need to spend time with people and their friends and family to figure out what makes a good life for someone, what do good quality services mean to that individual and how will we know when we see it. At the service agency level, providers will need to collaborate with everyone they serve (people with developmental disabilities, families, referral and funding sources) to figure out whether or not people are satisfied with their services and how they provide them. Finally, if people in a given regional center area want to enhance their local service system, they will need to collaborate on finding answers to questions like What's the best way to find out what kinds of services we need? and How will we know when those services are good?

Achieving A Balance in the Design of a Quality Assurance System

The ideal quality assurance system would , as suggested above, reinforce the development of individualized supports and discourage managed care approaches to service delivery. However, the realities of political and economic forces will likely dictate balances:

Accountability and Choice. Measures of self-determination and choice will provide the key to looking at successful outcomes for people with developmental disabilities. However, funding sources (whether local, state or federal) typically require more traditional methods of accountability when purchasing or brokering services with public moneys.

Local Control and State Direction. The regional center system was developed to ensure the development of services which reflect the needs of local communities. Recent changes in the Lanterman Act reiterate the importance of local control through outreach efforts, generic resource development and performance contracts. However, it also encourages the responsibility of the Department of Developmental Services to provide leadership for these 21 local constituencies through policy, training and technical assistance.

Critical Elements of a Comprehensive System

Policy Direction from the Department of Developmental Services (DDS) and the State Council on Developmental Disabilities (SCDD).
It's critical that these state agencies act in unison to provide leadership in the implementation of a comprehensive, statewide system. As it has with performance contracts, the Department (in conjunction with the Council) should direct a collaborative effort between Regional Centers and Area Boards in the development of a local Quality Service Plan. In fact, this plan should be incorporated into the contract.

Quality Service Plans. In order to adhere to the mandates of Senate Bill 1383, local plans should include the following:

Documentation of how the plan was developed through community involvement and public meetings.

Methods for including people with developmental disabilities, their families, advocates, services providers and community members in all quality enhancement activities.

Goals and objectives for enhancing local service quality.

A commitment to collecting information on valued outcomes for use by the Department and Council in an annual statewide report.

An annual report of activities and progress on service quality goals and objectives.

Development of a Life Quality Review. The Department should add information elements to the Client Development and Evaluation report (CDER) regarding life quality (e.g., friendships, community life, health). In addition to a set of commonly asked questions, there must be an opportunity for adding individualized questions as well. None of these questions should be considered a part of the CDER assessment and they should not be linked to service rates. The procedures for completing this component of the CDER should be flexible enough to include persons (or families when appropriate) completing their own reviews. This review will need to meet the test of the courts as a central element of the Coffelt settlement. It will also create a statewide database which can be used in a general way to drive resource development, training and technical assistance.

Individual Program Planning. Senate Bill 1383 revisions to the Lanterman Act as well as the Coffelt settlement requires that service planning be completed in a way that will encourage choice, self-determination, and community membership. The IPP document must also include an individualized quality assurance plan. That is, in collaboration with the person, family and others, a way to determine whether the plan has been successful through agreed upon outcomes.

Self and Parent Peer Advocacy. While current performance contracts include a major goal area of Self Determination Supports, they should be amended to include more specific language regarding the development of and access to self-advocacy and parent peer support groups.

Revisions to Title XVII. Choice and self-determination in planning for services and selecting service options are not currently supported in Title XVII. A major realignment of these regulations must be completed . In regards to shifting the focus of service quality from the state to local agencies, Title XVII should be amended to include service quality in the program evaluation component of required program descriptions. In addition, these regulation should require regional centers to develop performance contracts with all vendored services which stipulate incentives for service quality as well as criteria for termination.

Revisions to Title XXII. As with Title XVII, a major realignment of these regulations must be also be completed in order to reflect changing service values. Title XXII should continue to provide a method of sanctioning licensed services when necessary.

State Level Coordination. An interagency coordinating committee of major licensing entities (Departments of Developmental, Social and Health Services) should be convened for the purpose of reviewing and eliminating regulations which conflict with changes in the Lanterman Act.