Consumers at the Center:
True Transformation
or
More Reform Without Change?

Selleck, Knight, Migas, Terrell

Recovery and Resiliency. Person/Family-Centered/Directed Planning. Evidence Based Practice. System Transformation. These are, by now nearly ubiquitous terms to those of us toiling in the vineyards of mental health services. These terms sometimes come with great specificity, including tool kits and fidelity scales. Others are less well defined and more subjective. Some point to clear objective outcome measures, yet others are qualitative.

In general, though, these concepts have been well received throughout the mental health community, albeit for different reasons. Consumers want to get and stay well. Service providers want to be effective. Funders and government entities are looking for efficiency and positive outcomes. If there is consensus that these concepts will take us where we want to go, why are they not universally applied? The philosophy of placing the consumer/recipient/client at the center of the work and providing demonstrably effective service is repeated as a value in countless mission statements, official directives, proposal requests and more. Motherhood and apple pie-like, these values are rarely questioned.

This paper will describe some of the barriers and challenges we have observed related to the issue, and will delineate some potentially fruitful areas for change.

We begin with language. Here we have the dichotomy of the language of everyday life versus the language of Medicaid, contractual arrangements, accreditation, and bureaucracy. Requiring that goals be written in the words of the persons served allows for true expression of what a person wants, but is often inconsistent with required clinical goals. Goals related to rehabilitation, resiliency and recovery may be personally described and desirable, but not supported by the required use of diagnoses and reimbursement limited to clinically-based treatment. The language of consumers and family members does not translate well into the Medicaid or medical model lexicon, which presents a barrier to real person/family centered planning.

Part of the process of developing a professional authority is to create a language that is specific to and primarily understood solely by its members. The process of professionalism is generally built around the kind of elitist distancing that this kind of language generation creates. One of the many things that must change in the construct of the medical profession is the use of language to hierarchically separate the professional from the consumer. There are many mechanisms available to do this, including training, practice and the ability for consumers to decide with whom they work.

Definitions

Rigid program categories are problematic. In a fee for service model and even with the kind of accountability now demanded in capitated models there are no flexible dollars. Every dollar must fit rather rigid program categories. In some areas, there seems to be a greater emphasis on the traditional individual and group therapy categories than existed a few years ago. In others, there is strategic examination of current billing code definitions in an effort to incorporate new practices; an “old wine in new bottles” approach.

For PCP to really be honest, the concept of a program needs to be reconsidered. By rigid program models we mean a predefined set of services that one moves through. Fundamental to person-centered planning is the concept that each individual determines what is important to live a meaningful life and the system’s job is to provide supports and services to help a person achieve this in a manner that makes sense to the person. When the system creates the services and supports in the form of programs, before asking people what they need, there will often be a poor fit. The flexibility of services and supports is paramount in honoring a person’s individual needs. For instance, many of the Evidence Based Practices (EBP) are potentially flexible enough to be of meaning to an individual, but are sometimes implemented in ways that are overly bureaucratic. This tendency is based on a culture that tends to be shared throughout the funding system, from the federal government down through to individual practitioner in an agency. Solutions to rigid program categories must consider multiple entities and must include a shift of values and behaviors based on changing the larger cultural perspective that the professional and the bureaucrat know what is best for people with disabilities. This cultural perspective is supported by giving incredible power to the bureaucracy and to professionals through allowing them to control the funding streams.

The definition of total disability is too rigid. One must be 100% disabled to get benefits and then maintain this disability status. This discourages any movement from being totally dependent. The problem with a rigid definition is that the criteria are arbitrary. Limits to earnings, and the boundaries of categorical criteria do not recognize the fact that many people need assistance both before and after their eligibility. This is poor practice for both the people who are experiencing these limitations and for the system as a whole because the dependency it creates drastically reduces the possibilities of planning for the full and meaningful life, and indefinitely continues high cost and use of increasingly ineffective services. A system that looked at functional limitations within the individual’s particular context would provide flexible supports that could change as circumstances changed. The simple issue of transportation exemplifies this. A person in a remote rural location who has limited employment skills will be more “disabled” than the same person in an urban area where transportation can provide more diverse job settings.

There are a few programs emerging that allow people to move beyond rigid criteria. The Medicaid Buy-in is a way to keep Medicaid coverage when earnings exceed limits set by eligibility rules. Much more thought, policy and funding needs to go into how to not only help people out of the poverty based system of care, but to also help prevent the downward spiral into these kinds of systems in the first place.

Multiple and occasionally contradictory forces are at work to channel people into “disability.” Those persons on TANF who have disability barriers are often in the “wrong” system to get Evidence Based Practices which would support their eventual employment. Instead, too often, they languish on the TANF rolls until the 60 month mark, when they are referred for Social Security. Minnesota’s Integrated Services Project is attempting to identify these multiply challenged families, and connect them to the full service array while they are still on TANF, in an effort to avoid ever moving to Social Security. The silo barriers to this activity are multiple, though the very fact of its existence signals progress.

There is too much blather about "recovery and resiliency" with an absence of definition of the terms. There is an ambiguity of terms. With ambiguity it is possible to bring together groups with opposing agendas and have a “consensus” meeting. The Powers That Be with this going on are able to control the real agenda, which may be the appearance of reform but no real change to satisfy the mental illness industry, the cutting of the costs of services, and a movement back to the older program categories to satisfy political interests. This unhappy outcome has occurred in some places, but certainly not all. The issue hinges on “the billable hour,” and providers are understandably opposed to changes that cost them money. If adding a consumer run support group, for example, is unbillable, it will not be done. The Federal and State systems have “trained” providers to do what we pay for. Reforms are embraced in states ( Colorado and Minnesota for example) when financial incentives are aligned with recovery activities.

Recovery, at least, must ultimately be defined by the person recovering. The basic principle of person-centered planning is that the individual is the expert in his or her life. So in a way recovery is always an empirical question based on the individual. There is plenty of literature that lays out general principles and categories to consider when working with someone, but overall the problem with many of the definitions are that they are categorical and process oriented rather than outcomes oriented.

Funding issues

Payment systems that rely on simple fee for service can be barriers - capitated models may be better. Cost based bundled rates also reduce complexity. The basic idea here is that if you pay someone by the hour to do something they will do more and more of it. In the case of the mental health service provider this means more and more services to a person that builds a dependency relationship and fails to move someone toward a concrete commitment to work or even volunteer. This dependency of the provider on the billable hour and the consumer on the provider leads to the discouraging of the consumer from doing anything meaningful in his/her life. It may, in fact, unnecessarily encourage long-term engagement rather than planned transition to independence. Strengths based planning needs to have supports in rule, law, and funding. There is a need for funding that supports the individual hopes and dreams of the persons served, with a focus on rehabilitation and recovery. The building of resilience needs to incorporate a person’s strengths, abilities and preferences, but funding tends to pay for clinical treatment that often does not include these aspects of recovery.

Integration of funds, blending, braiding, requires consistent support from all levels of government, or the discontinuities between levels creates gridlock. Another approach to funding to support PCP is through shifting control over dollars to people with disabilities who then can decide who they want to help with person-centered planning. This should be considered both on a collective basis and through individualized budgets (i.e. self-direction). While this approach has proponents, there is also an inherent tension and uncertainty about whether there is any guarantee that high quality services will be available to purchase if there are no consistent funding underpinnings. A robust provider network is needed and it must be easily accessible. As anyone who has dealt with the medical community knows, whether for the flu or severe depression, when one is debilitated, it is the most difficult time for self advocacy.

Inconsistency between parts of the Federal Government , which trickle down and are acted out at all levels down to the local are ubiquitous. Federal agencies are not synchronized - one branch wants Evidence Based Practice, issues toolkits, and the other punishes states/providers for doing it by not funding it. There are the ongoing dysfunctional splits between employment help, social service help, educational help and medical help. All these parts of a person’s life must be drawn together, and funding and regulation modified to assist providers to do it . Program categories both support and reflect the fact that basic needs such as housing, transportation, and employment are spread across multiple federal, state, and local agencies. For example a desire to work often requires a coordinated effort between Medicaid funded supported employment and Department of Labor funded vocational rehabilitation. It is generally left to local level agencies to make these connections, which creates a vastly uneven national picture. A more efficient process might start with Federal level leadership that combines funding streams and reconciles policy differences in partnership with stakeholders in states. The systems of support are ostensibly put in place to assist people in living a better life, but in practice create incredible barriers. A basic fact for people seeking help is that support, to the degree that it is available, is found in fragmented and overly bureaucratic systems. A process needs to be put in place that brings teams of people together at each level of government, and private industry where it is involved, with the goal of comprehensively reorganizing the policies surrounding the funding system so that there is one point of entry and no contradictions in funding. This charge has traditionally been delegated down through the system resting ultimately with the consumer. There must be a massive undertaking starting with action based leadership at the Federal level to combine these funding streams in a way that creates a seamless and interconnected system of supports.

In the absence of such efforts we merely perpetuate "reform without change."

Strengths vs deficits  

The medical model focuses on deficits, and is difficult to reconcile with a strength based approach that is more appealing and accessible to consumers and family. When strengths (desires, positive experiences, skills, attributes) are even recorded in charts (which is seldom) they are almost never translated into a goal and a plan for accomplishment with a strategy for supportive skills teaching, social support and resource planning. If consumers fail to state strengths there is no process to move people from dissatisfactions to desires underlying dissatisfactions to goal to plan. There is an emphasis on social control because of government and social pressure and so, for example, there is almost never a plan to move people from payeeship to independence which kills motivation. Consumers are systematically taught to be fearful of “normal” goals, or that normal goals are dreams beyond reality. The”stress of success” is emphasized. Functional baselines are set low at someone’s least functional period and anything beyond this is delusional. Then consumers are labeled unmotivated. There is a rather awkward process that has to occur for a person to get into a position to focus on strengths within a Medicaid eligibility context. First, there has to be an emphasis on all the challenges and problems that a person has in order to get them in the door. Then for a period of time there has to be a de-emphasis of these in order to focus on strengths. This issue is confounded when eligibility criteria for simultaneously needed programs are conflicting. Once re-eligibility comes up the focus again has to be on the challenges. 

Of course in real life everybody has challenges and strengths. How challenges and strengths are worded makes a great deal of difference. One of the many bizarre aspects of the mental health field is the kind of obsessive control over not allowing consumers to see what is written about them in medical charts. Unhindered consumer access to all the information in the charts may help create a more balanced and thoughtful focus on strengths by providers. This must be combined with removal of coercion and free choice of providers.

The dynamics between staff and consumers is critical to quality. The increasing use of Motivational Interviewing (Prochascka) holds great promise for creating an atmosphere of creative inquiry and problem solving within the helping relationship. The core premise of the technique is fundamental to everybody’s life, which helps diminish the perceived status differences. As Evidence Based Practices begin to be the default practice this method will hopefully become widely practiced.

Outcomes and performance

We will assume that the end goal is that planning for people with mental illnesses will be based on person centered or person-directed principles. For PCP to be implemented, providers responsible for the activity have to change their behavior. Performance-based contracting can provide financial incentives for providers to implement PCP, or at the least, start by removing disincentives. The enhanced quality management and control mechanisms in managed care models (such as preauthorization and utilization review) increase the potential for performance-based contracting to work. Performance-based principles can also be used in grant making at all levels of government. One of the very slippery and difficult aspects of PCP is that once the planning assistant and the consumer are behind a closed door it is very difficult to know if much person-centeredness occurred. The consumer must ultimately have, not only the authority to select people to assist in the plan, but also the confidence that a selection will not result in negative consequences.

Accreditation and standards language can support real recovery but organizations must be able to fund the concepts. Accreditation standards can be developed to create a blueprint for educating providers on issues of recovery, and create a foundation for programs that support person-centered planning. This should include language that requires active involvement of the person served in the development of the PCP; the inclusion of strengths, abilities and preferences in the PCP along with the presenting issues; and goals that are expressed in the words of the person served. However, funding agents and regulators often require standardized assessment tools or clinically defined goals and objectives which make individualized service planning difficult or necessitate redundancy. One of the most frequently missed of the CARF standards is that goals be written in the words of the person served. Providers report that, while they realize what this means, their funding sources often only pay for clinically-defined goals, not, “I want a job, a home and a date on Saturday night”. 

Moving to an outcomes approach that is related to the PCP has many benefits for families and consumers, most notably the opportunity to ask providers how well they are doing in actually assisting people to make progress in objective criteria. Also, involving families and consumers at the policy level in determining what those desired outcomes should be and how public funds are used to get them creates a more meaningful conversation with more specificity than the generalized endorsement of “recovery principles.” There is, however, some sense of reservation among advocates who are used to having the “hook” of process measurement to hold systems accountable. There has been comfort in counting numbers of contacts and looking at hours of service, and state rules often incorporate these yardsticks. Moving to an outcomes approach with new measurement methods will likely mean letting go of the old, due to limited funding for these data collection activities.

It has to be said that measurement, even of desired outcomes, is costly. In the “flat world” a la Friedman, the use of web based, essentially paperless data collection methods holds promise. Still, it is “clunky” because we are limited to categorical variables as proxy for internal qualitative experience. Fortunately, there seems to be evidence that positive practices lead to wellness and internal satisfaction, which leads to actions which are measurable.

Power has to shift. People who control how funding is allocated and what things are funded have to give up some of that control. To make these kinds of changes, some of the boxes need to be thrown overboard and new boxes need to be brought on. The fact is that the people who care about reform the most (consumers) have the most to lose by challenging the system. What little is offered in the way of help often comes through the misery of multiple forced hospitalizations and total impoverishment. Or, more often, help is delayed due to the stigma of mental illness. While the current work of Kessler has shown some improvement in the willingness of the general public to acknowledge mental health concerns and to seek assistance, most people are still starting with family practitioners who are ill equipped to deal with complex psychiatric issues. This leads to unnecessary pain as treatment is delayed.

Change Strategies

We have emphasized two forces at work which can lead to positive change. The first, discussed above in greater detail, is the need for “top down” changes in fiscal incentives, driving the provider community toward recovery outcomes.

The second could be thought of as “bottom up,” and may necessitate advocacy of a different type. Perhaps an additional strategy is to have independent advocates in every planning process who would make sure that the consumer gets a person centered plan with flexible options for services, and a copy of the authorized plan. Perhaps, further, the consumer and advocate would be prepared to take legal action if the plan is not fulfilled. If, for example, supported employment was recommended in the plan, but no resources are forthcoming to implement the plan, there would be an objective discrepancy to be remedied.

This may sound extreme. The likelihood of universal application of this idea seems remote. Conceptually, the “80%-20% rule” may apply here -- in any community 20% of the people who are willing to do what it takes to make the system accountable will benefit the other 80% who are not so tenacious.

Both of these, and other, strategies will require collaboration between stakeholders from all corners in order to succeed.

Everyone has a role in recovery.Consumers must become informed and ask for what works. They must ask providers about the outcomes they deliver. By cultivating positive practices they may enjoy greater health. This may lead them to consider self, peer support, and political advocacy. Policy people and administrators must read the research about effective services and they must examine laws, rules, and policies to root out discrepancies. They must be relentless in changing what does not support recovery. They must expect outcomes for public dollars. They must collaborate in these efforts, and in so doing must “stay in the mission“ because that is what will sustain them as individuals in unfriendly bureaucracy. Direct service staff must cultivate their own personal characteristics that support recovery: creativity, flexibility, persistence, empathy and the avoidance of objectifying people. They must know what supports outcomes and be willing to upgrade their skills when new techniques appear to be useful. They must question authority in the service of the mission. Families also must find out what works and ask for it. Their participation in the political process to insure resources for effective services is critical.

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