RECOGNIZING THE REALITY

In April, 1994, we wrote and widely distributed a paper entitled "Realizing the Vision." The public response to that paper was overwhelming. It was apparent that we had identified issues of great significance to many people.

This paper is, in a sense, a follow-up to "Realizing the Vision." The reality of decreasing funding for people with developmental disabilities appears to be taking shape around us. While we must, as advocates, do everything in our power to prevent this, at the same time we must be prepared. We must recognize the reality and deal with it.

This paper suggests a way to start.

September, 1995

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

SAVING THE ENTITLEMENT

The developmental disabilities system in California recognizes the value of being a "consumer driven" system. However, right now much of the major decision-making in the system is fiscally driven. The viability of the entitlement is being questioned as funding reductions become reality. We must not allow the entitlement to become the scapegoat for our fiscal problems. There is no reason to allow this to happen. There is every reason to prevent it.

Many people are talking about the possibility that California may have to give up its developmental disabilities entitlement, or at least better define it, because we are facing the possibility of funding reductions.

There is a serious mistake in this thinking.

The "entitlement" is not tied to funding. It never has been. There has never been a time when the entitlement was "fully funded." It is funded to one degree or another regardless of what the law says about people receiving the services called for in their IPPs. We all know this. It is frustrating for consumers and families; it is difficult for Regional Centers to manage, it has required service providers to subsidize significant portions of their operating costs through fundraising, but we have been living with it since the entitlement was enacted. To think that we have to give up the entitlement because funds are reduced is to completely miss the point of entitlement.

The most important elements of the entitlement are not about funding.

The most important elements of the entitlement and the reasons why we must preserve it are:

1. It reminds the legislature that California has a commitment to people with developmental disabilities. There are very few groups who have advocated strongly enough to achieve this. It is the most valuable asset our consumers and families have.

2. It assures that some of California's dollars will be allocated for services and supports for people with developmental disabilities. Remember that some is better than none.

3. It affirms that people with developmental disabilities have certain legal protections and rights.

4. It establishes the IPP as the guiding document and focus for individual decision making. Without this, the state could decide on basic services everyone needs and provide just that.

5. It establishes a method of due process, a "grievance procedure" through which individuals may appeal decisions made by government. Without this, individual citizens have no legal ground upon which to stand and be heard.

6. It affirms the importance of a system which is easy to access and responsive to local community needs. Non-profit Regional Centers were created to assure that the system would not become a faceless state bureaucracy.

7. It establishes mechanisms through which the actions of government can be monitored. State Council and Area Boards.

These are the most essential elements of the entitlement and they can be preserved whether funding is adequate or not.

If funds are reduced for people with developmental disabilities, difficult decisions are going to have to be made about how to cope with those reductions. These difficult decisions will have to be made whether entitlement is in law or not. What we must do is engage in intelligent planning for how we are going to live within our means. Living within our means and retaining entitlement are two different subjects. Don't confuse them.

The only difference between making these decisions with or without entitlement is who is involved in making the decisions. If entitlement remains in law, we will face the decisions together. If entitlement is repealed or changed, the state can make decisions about which services are available and who can receive them.

At its most fundamental level, entitlement gives consumers, families and advocates a voice. If funds for people with developmental disabilities are reduced, we will need that voice more than ever.

We must not even consider changing the entitlement.

Entitlement must remain in law.

Securing the Future of Services to People with Developmental Disabilities in California: A First Step.

The Department of Rehabilitation (DR)'s implementation of "Order of Selection" on 9-1-95 is a perfect example of what can happen without entitlement. This, and DR's decision to phase out some day program services for consumers with developmental disabilities on 7-1-95 was the catalyst for the thoughts which follow. This discussion focuses on non-residential community services. It is written from the point of view of experienced service providers, parents and advocates who know what it takes to create and sustain quality services and supports in the community. The discussion focuses primarily on direct services purchased by the Department of Developmental Services (DDS) and DR for consumers, rather than issues relating to the operations of DDS, DR and Regional Centers.

Historical Context

Introduction:

During the 1970's and early 1980's it was universally accepted within our field that community services needed stable funding and a structure that would bring statewide consistency and equity to quality standards and to rate setting. Advocacy groups were instrumental in pressing for and negotiating these statewide standards.

These were the years during which our system was developing from a loose, primarily locally driven system into a more organized statewide system. Providers of services were realizing they could better advocate for quality services at reasonable rates if they stuck together and insisted upon statewide standards equitably applied.

There was always a level of tension in the negotiations between service providers and the government entities which were to fund the services. The tension revolved primarily around how best to assure quality through meaningful standards and reasonable rates while controlling costs to the state.

In the case of DDS and Regional Center funded programs, the Department had to be sued to force the promulgation of standards for both rate-setting and program quality.

Operating Assumptions:

During the years in which our current system was developed, there were some relatively unquestioned assumptions inherent in the discussions. Those assumptions were:

The purpose of services is to meet peoples' needs and assist them to become as independent and productive as possible. The role of government, to assist citizens in need, was relatively unquestioned.

A system should exist which makes all services available in all areas of the state, to the greatest extent possible. The system can assure equal opportunity to access services while also remaining responsive to local needs.

Equity and fairness in rate setting for service providers was important, not only for assuring quality, but also to demonstrate careful stewardship of tax dollars.

Reimbursement rates would reflect the service needs of consumers. Because costs are in large measure a function of needed staff ratio, those whose disabilities necessitated greater staffing would cost more to serve.

Given the tendency for individual Regional Centers and individual D.R. Districts to interpret the state's standards differently, it was essential that service providers cooperate with each other and demand statewide standards and equal treatment.

Previous to 1985, because of the expectations D.R. had for its consumers, it was unlikely that community employment would be an outcome for most people with developmental disabilities.

In the mid 1980's, several important changes occurred.

Supported Employment became a strongly desired outcome for people with developmental disabilities,

Community based services became available for those with the most severe disabilities, and,

Consumer choice became a driving force in the system.

Our service system can never go back to the way it was before. Because of these initiatives, many thousands of consumers have made enormous progress in the past ten years, and this must continue.

Current Situation

It is our belief, however, that these initiatives contain certain fundamental elements which are in conflict with the assumptions listed above which were unquestioned before. We believe many current problems in the DD system in California can be traced to the fact that no one has addressed these basic conflicts and satisfactorily resolved them. Almost everyone is in some stage of denial about these conflicts. In the absence of clarity about these issues, many people are questioning the future of the entitlement.

The essential conflicts revolve around Quality, Cost & Choice:

1. It costs more to deliver quality services in the community than in center based programs. It costs more because the staff to consumer ratio has to be greater if health and safety are to be preserved and meaningful inclusion in the community is to occur.

2. The higher cost of community-based services conflicts with the assumption that people with more severe disabilities will always cost more to serve than those with less severe disabilities (i.e. a person in Supported Employment who changes jobs twice in a year can cost the state more than a person with more severe disabilities served in an ADC program).

3. The honoring of consumer choice completely contradicts the assumption that costs will be related to level of the consumer's needs . Now costs may be related to the level of the consumer's choices (desires/ambitions). With Supported Employment and intensive community based services, we are no longer just assisting consumers to "become more independent," (i.e. as much independence as one can develop in a program funded with a normal DDS or HAB rate). Now we are talking about realizing a person's full potential. This is a fundamental change. It is a dramatic change in the perceived role of government, and now, voter sentiment is moving in the other direction. Our entire system adopted the value of consumer choice without addressing the fiscal and political implications of the values shift.

The inevitable result has occurred: The state does not have unlimited funds to assist consumers to fulfill their choices. California's dependence on federal funds has grown each year. There are other populations who also have critical unmet needs. (These individuals for the most part have never had entitlement in the way our consumers have.) Yet, the state affirms the philosophy of consumer choice and a vision of all that is possible for people with developmental disabilities.

Now we know the probability of significant reductions in federal funds for California is fast approaching.

Now we debate the security of "natural supports," try to define quality and minimum standards in the same breath, and wonder what "cost effectiveness" really means. Now we turn to generic resources often to find that they are also experiencing cutbacks and may not be receptive.

Now we see our system of community services, which was never fully funded, facing even greater reductions.

Now we see increasing numbers of consumers and families caught or falling through the cracks.

There are many individuals in government who are sincerely committed to people with developmental disabilities and who struggle daily, along with service providers, over this dilemma.

So, we are at an impasse. Each of the two state departments primarily responsible for services to people with developmental disabilities has taken a different approach to the essential conflicts.

The DR Approach: DR (not bound by an entitlement to VR services) has made a policy decision to back away from some day program services to people with developmental disabilities and return the responsibility to DDS.

The DDS Approach: DDS (bound by entitlement) attributes responsibility for budget shortfalls to the way Regional Centers manage their budgets. Regional Centers often relay that responsibility to case managers, expecting them to be consumer advocates and also control the POS budget. This is a difficult conflict of interest situation for everyone involved.

If we are to preserve the rights of people with developmental disabilities, we must address the fundamental dilemmas we are facing. We suggest a starting point would be to answer these questions:

1. What does "cost-effective" really mean? Is there a point at which an outcome cannot justify the cost? (When the Department of Rehabilitation announced its decision to phase out VR-DDS, high cost and low outcomes were cited as the reason. What definition of cost-effective were they using?)

2. To what extent can California afford to provide community based programs?

3. Can all consumers have equal opportunity to access all types of services? If not, which consumers should have priority for which services?

4. Is the proper role of government to "meet needs" or to "support choices?"

5. Do we know what we mean by consumer "choice?"

Our system has confused two different meanings of the word "choice."

Choice = the availability of options

Choice = the act of decision-making

Our system has at times allowed consumer "choice" to become a simplistic concept that consumers can choose whatever they want and the entitlement requires that the state pay for it. This incorrect interpretation of the word leads to further questioning of the viability of the entitlement.

Until these five questions are answered, rational decision-making about our community services system is difficult at best.

In addition, we must address several issues related to the administration of the system:

1. In the long run, will the movement away from negotiated statewide standards and towards more local "flexibility" (in service quality and rate setting) have a positive or negative effect upon consumers?

Movement away from statewide rate-setting and quality standards as individual Regional Centers contract for services can distance DDS from statewide responsibility to assure quality services and equitable rates. We must assure that contracting is carried out in a way that assures sustainable quality services are available to consumers throughout the state.

2. What does "quality" mean?

3. What is the most effective way to assure quality of services?

4. How can the relationship between service providers and funding sources be improved to assure thoughtful coordinated community planning for a sustainable future?

To continue to pretend that service providers operate in a free market system and to continue to expect free market forces like competition to guide the evolution of the system is foolish. In a service provider's business, supply, demand and price are all controlled by funding sources. We need to face the implications of this fact and plan for the future accordingly.

5. Is there waste in the system? How much more direct service could be provided if this were identified and eliminated?

WHY IS IT IMPORTANT THAT WE ADDRESS THESE ISSUES?

Professionals throughout the developmental disabilities system are struggling with the dilemmas identified here. They are, indeed, difficult issues.

The danger is that in the absence of thoughtful analysis and careful leadership, things will degenerate and the entitlement may well end up being the scapegoat.

It is easy to make the entitlement the problem. "If only we didn't have the entitlement, we could have our values, provide really high quality, consumer driven, outcome oriented, community based services to all consumers regardless of their level of disability (on a limited basis within the funds available) and there would be waiting lists."

Clearly, this would be much easier to manage, and the services that were provided could be top quality. There just wouldn't be as many. This is a tempting solution from an administrator's point of view. It is not, however, so attractive if you are one of the people on the waiting list, or their mom, or their dad.

And the question looms: If there were no entitlement, and if waiting lists were no longer something to be hidden or denied, just exactly how much money WOULD the legislature appropriate for services to people with developmental disabilities? Do you think it would be more than we receive now, or less?

Every person who sincerely cares about someone with a developmental disability must think deeply about the issues listed in this paper. Everyone in every part of the system is going to have to make sacrifices in the coming months and years. Everyone must share in this responsibility. Even as we strengthen our advocacy efforts, to continue to expect the entitlement to be fully funded or to continue to believe consumer choice is guiding the system is foolhardy. We must face the questions raised in this paper and answer them.

How we approach this is vitally important. The manner in which we go about achieving a worthwhile outcome will have great impact on the outcome itself. It is a privilege and a responsibility to work together for a common purpose of great value. We must recognize the importance of the task before us and find a way to bring the very best of ourselves to this effort. We must find a way to look beyond our personal interests and see what is really at stake here: the quality of life of people with developmental disabilities in California for generations to come.

* * *

 This paper was written to inspire thought, discussion and action. We are hopeful that local communities will come together and address these issues as they apply in each Regional Center area, and we are hopeful that statewide organizations will provide leadership to address these issues with their constituencies.

We welcome your comments. Please write or fax your comments to:

Christine Imrie, Executive Director
Futures Explored, Inc.
3547 Wilkinson Lane
Lafayette, CA 94549-4322
FAX (925) 284-3291

Diana Jorgensen, Coordinator
Contra Costa County Developmental Disabilities Council
2801 George Miller Drive
Richmond, CA 94806
FAX (510) 374-3893

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

Barbara Maizie, Executive Director
Contra Costa ARC
1340 Arnold Dr., #127
Martinez, CA 94553
FAX (925) 370-2048

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