REALIZING THE VISION

By:

Christine Imrie, Executive Director, Futures Explored
Diana Jorgensen, Coordinator, Contra Costa County Developmental Disabilities Council
Jeanne King, Parent
Barbara Maizie, Executive Director, Contra Costa ARC
Rocio Smith, Coordinator, Alameda County Developmental Disabilities Council

With thanks for their advice and assistance to:

Jane Hunt, Parent
Bob Perotti, Parent
Cecily Purcell, Parent
Norma Zeff, Parent

Alameda & Contra Costa Counties

April 1994

Introduction

The developmental disabilities system in California is undergoing dramatic changes. New and exciting options are becoming available to many consumers. People with developmental disabilities are proving themselves successful in the mainstream of society. Examples of supported living, using paid and natural supports, have been developed all over the state and the demand for more is growing. The guiding principles of this exciting new movement are consumer rights, choice and self-determination.

It is in the spirit of consumer rights, choice and self-determination that we are raising the issues in this paper. It is our belief that as the system advances, successful change must be built upon a common value base and a solid foundation of programmatic and fiscal planning. We raise these issues to stimulate discussion which we hope will lead to a stronger foundation for lasting, positive change and a better quality of life for people with developmental disabilities in California.

Perspective

In 1990 the State of California took its most comprehensive look at services for people with developmental disabilities since the 1977 passage of the Lanterman Act. A thorough and far reaching process was undertaken in which many dissatisfactions with the then current system were brought to light and ideas for change and improvement were gathered. The January 1991 SR-9 Report is the documentation of those findings.

Since then, another historical event has taken place - a budget crisis in California that is unparalleled in our State's history.

Many Californians are now asking themselves: How do we take the opportunities which have been created and continue to move towards a society which fully includes people with developmental disabilities? How do we respond to the needs which have been identified? How do we accomplish this within the constraints of the fiscal realities of the '90's?

The SR-9 process which resulted in SB 1383, authored by Senator Dan McCorquodale, was a turning point for the service delivery system. This California legislation, along with major legislative advances at the federal level, ushered in a new era...a new focus on choice, self-determination and opportunities for people with developmental disabilities to live full lives in their communities.

As our system enters this new era, we must remember that a fundamental strength of the American system of government is the environment we create to interpret law. Through interpretation, laws withstand the test of time. It is imperative that the interpretation of law reflect the common value base of the people the law serves. The Lanterman entitlement to services is a law of this stature. It requires full participation of all those affected to develop an interpretation which reflects our common values. What price will be paid if the interpretation does not reflect the values of the majority of people the law intends to serve?

Some of the changes envisioned in SB 1383 are beginning to take shape in the developmental disabilities system. As this process moves forward, we must ask ourselves several important questions:

In realizing this vision, has enough thought been given to the consequences of implementing the changes?

Are the fiscal assumptions of cost neutrality or cost reduction valid?

Are the voices which have articulated a new vision representative of all those concerned? How do we ensure that all voices will be heard as we move forward?

As we move towards full inclusion of people with developmental disabilities into our society, how can we encourage progress and also ensure that our system remains respectful of, and responsive to, the rights of individuals and families to develop at their own chosen pace?

All of us have a responsibility to openly and honestly address these issues.

A Common Value Base

In moving towards any new vision, the element of trust becomes an essential factor. Our service system is complex because of the interrelation within it of consumers, families, friends, service providers, regional centers, advocacy groups and the diversity of local communities. No one part of the system can change without affecting all the other parts. No one part of the system can effect meaningful system change without cooperation from all other parts. The vision which guides the change must be shared, and there must be trust among those who bring the vision to reality. Trust, based on positive values, can withstand open discussion. When it is time for change, and that change is based on commonly held positive values and beliefs, that change cannot be stopped.

Discussions are taking place all over the state of California about the changes occurring in our system. Throughout these discussions, suspicions of "hidden agendas" keep surfacing; suspicions that are undermining the implementation of SB 1383. There is an urgent need for open communication and the establishment of a true common value base as this law is interpreted and put into practice. Without this, system change cannot be successful.

The "hidden agendas" most often cited are:

That some policy makers are motivated primarily by a desire to save State general fund dollars rather than by a desire to genuinely improve the quality of life for people with developmental disabilities.

That there is no real commitment to offering a full array of services to consumers and families. That the Lanterman Act is being selectively interpreted to emphasize the choices preferred by some and to eliminate the choices of others.

That selective interpretation of the Lanterman Act is often resulting in the exclusion from the IPP process of those individuals, including family and friends, who know consumers best, who love them, and who are most intimately concerned with their future well-being.

That an unstated intention is to eliminate center based programs, specialized programs and all related transportation costs. That those funds would then be used to lower regional center case loads and assist service coordinators to focus on the development of unpaid natural supports in the community.

At the same time, there are questions and concerns being expressed about the way change is occurring and the validity of some underlying assumptions:

By making families responsible for developing and maintaining unpaid natural supports, will families find themselves back where they were before the Lanterman Act?

The increased emphasis on consumer rights and choices is disengaged from the responsibilities and natural consequences that accompany them. Will adult consumers experience the true consequences of their choices? How do we balance the dignity of risk with an individual's need for guidance in making those choices?

Does using the concept of natural supports as the main foundation of a new service system, without solid evidence that natural supports are sustainable, risk the future of persons with developmental disabilities? California's experience with the mental health system is a frightening precedent.

It is a grave error to equate "quality assurance" with "consumer satisfaction." Consumer satisfaction is one important part of quality assurance, but many other essential quality assurance functions are being systematically eliminated.

The serious dilemma posed by those vendors who view the provision of human services as a business first and foremost has contaminated the public perception of service providers in general. Action needs to focus on assuring ethical, stable, high quality, consumer driven providers.

The changes currently underway are based on the assumption that when we talk about certain key concepts we all mean the same thing. Do we all have the same operational definition of empowerment, choice, best practices, redirection of funds, consumer driven, cost effective, and outcomes?

Expectations and perceptions are powerful. People with developmental disabilities have been needlessly held back as a result of the limited expectations and inaccurate perceptions of others. In working to remove negative perceptions, in trying to empower people and families, in the effort to make self-determination real for people with developmental disabilities, are we creating an environment which ignores and devalues the individual's limitations and needs? Or are these limitations and needs seen, but not acknowledged? Is there a danger that empowerment will become neglect?

Things are rarely simple; issues are never just black and white. All views have some validity. Keeping this in mind, we must all work together to address these fundamental questions.

Fiscal Assumptions

Everyone involved with the system of services and supports for people with developmental disabilities agrees that the system must demonstrate a wise use of the State's limited resources.

The service system must demonstrate fiscal prudence so as not to jeopardize the right to entitlement to services by people with developmental disabilities. This is crucial in light of the great demand upon the state for human services. Because system change is often expensive to implement and full of unexpected costs, there is a serious responsibility to address, at the start, the fiscal implications of the proposed changes.

When new service modalities are proposed, pilot projects are usually undertaken. One of the essential steps is to project the fiscal implications of the changes based upon results of the pilot projects. We are not aware that this has been done in California.

Careful fiscal analysis appears to be absent from the process of change our system is embarking upon. Discussions of the proposed system changes are characterized by strong affirmations of cost effectiveness and cost neutrality. However, there is no public evidence of any rigorous short or long term fiscal analysis.

Simultaneous with the onset of changes, and in what seems to be the absence of hard data, the concept of natural supports has become very visible and almost universally mentioned by representatives of funding sources as the appropriate response to any questions about increased costs associated with planned changes.

The concept of natural supports is one of the key elements in SB 1383. Natural supports and natural environments are of great value to self-determination and system improvement. The benefit and value of natural supports and natural environments are not in question. However, it is incumbent upon those who are implementing changes to consider the fiscal implications of these approaches. While there has been a short and active history of research in areas related to natural supports, there has been no study of their long term economic or service impact.

Simultaneous with the focus on natural supports is a growing discussion about the redirection of tax dollars within the system from one service modality to another and/or from purchased services to service coordination. Here again, a solution is presented as cost effective or cost neutral without a study to determine whether or not this is a valid assumption.

This is a time of great change in our state and indeed our nation. We have a responsibility to ensure we are embarking on a system change that can be reasonably supported financially and will result in stability and a better quality of life for people with developmental disabilities.

There is one additional topic which must be addressed, and it must be addressed FIRST if the changes in our system are to proceed successfully.

People in the developmental disabilities system in California are making the serious mistake of "labeling." We have seen this mistake manifested in the lives of the people we serve. We know that labeling closes minds, stops dialogue, and robs everyone involved. And yet, it is done every time someone tries to talk about the issues in this paper.

The minute someone brings up a concern about how things are going, they are labeled "anti-inclusion." The minute someone expresses enthusiasm for change and more community inclusion, they are labeled "fanatic." This sort of thinking closes the doors of discussion.

Each community in California has active consumers, families, professionals and people in leadership roles. These are the people who sincerely care about the well-being of all children and adults with developmental disabilities and who are actively involved in making our system work for consumers and families. We know each other yet we have labeled each other. We talk politely together and then whisper our real opinions with other people who wear the same label we do. We need to stop this. Naturally, there are honest differences of opinion. We must not be polarized by our differences; we must listen to each other or else we endanger what we now have and what we can create in the future.

We must come together and take responsibility for the future of our system. Each local community needs to assure that it is interpreting SB 1383 from a sound basis of information, clear definitions of key words, and a common value base. Otherwise, the promise of SB 1383 will be a hollow one indeed.

We hope that these ideas have fostered some thought on your part. We welcome your comments. Please write or fax your comments to:

Jeanne King
7 Kensington Court
Kensington, CA 94707
FAX (510) 525-7703

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