Consumer Choice, Normalization, and Entitlement

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Consumer Choice, Normalization, and Entitlement

 

By Carl R. Ochsner, MS

 

In recent decades, our industry has been swept by several powerful and occasionally conflicting theoretical perspectives. One such perspective was reflected in the Federal Rehabilitation Act of 1973, which affirmed the right of persons with disabilities to receive vocational and other services in the least restrictive setting possible. In California, that same decade, the Lanterman Act was passed which clearly established entitlement to vocational services for adults with developmental disabilities. Both pieces of legislation have been sustained, augmented, and expanded over the years.

 

In 1972, Wolf Wolfensberger published The Principle of Normalization in Human Services, wherein he delineated and explained his idea that providing an integrated, challenging, and normalized environment for persons with social deviancy potential is of paramount importance. A critical concern for Wolfensberger, and one which we ought to take seriously, is that providing “special”, untypical, or non-age-appropriate responses and experiences to adults with developmental disabilities cannot only forestall rehabilitation, but may actually further exacerbate the impact of disability.

 

In the 1980’s, the Rehabilitation Accreditation Commission (CARF) strongly encouraged vocational training programs to behave more like commercial businesses; by defining core services, identifying potential markets, and creating a strategic planning process based on careful analysis of the needs of its primary user groups. More recently, the older “market-based planning” model was supplanted by consumer-based planning and an increasing emphasis on having individual consumer (client) choices actually drive the design and strategic decisions of the human services-based business.

 

While our industry has, over the past two decades, enthusiastically embraced the concept of planning based on the needs and choice of consumers, at the same time we have come to see the role of our rehabilitation services program as increasingly involved in reconciling the needs, wishes, and entitlements of various consumer constituencies as these come in to conflict with one another. As we do so, we ought to be guided by principles derived from the concepts of entitlement, normalization, and consumer choice. Several important considerations are outlined below:

 

In future years, the consumer base of many of our programs will likely become broader than it has been in the past. It may then include not only persons with disabilities, but also elderly citizens, welfare recipients, economic development advocates, commercial and business entities, our local adult education system, small entrepreneurs, parents, families, and careproviders, and other interested elements of the community as well.

 

Our programs and facilities will best honor consumer choice by attempting to assure that as broad a variety of choices as possible are created, and kept available to our consumers; especially within rural areas, which possesses relatively few competing service providers.

 

Entitlements to services can be considered inalienable rights only when the resources available to meet those entitlements are unlimited. In all other cases, access to particular services must be prioritized, with highest priority going to those with the greatest need. For persons with disabilities who seek our services, this will mean that those individuals with a greater severity of disability must have first claim on available service slots.

 

Program participants should expect to receive services in the least restrictive setting possible, consistent with the individual’s demonstrated needs and capabilities.

 

Consumer choice must be given high priority in making service assignments. When individual choices, in aggregate, outstrip the capacity of a given program or service site, priority should be given to those individuals for whom that particular level of supervision and structure is most appropriate. Others, for whom a less restrictive setting may be a very real possibility, cannot be permitted to either jeopardize the financial sustainability of that service element, or to prevent access by more needy individuals.

 

Individual choice is the paramount consideration at points in the service system where an individual with a developmental disability makes a decision about his or her participation. For example, no one is necessarily expected to choose a work-based service from among an array of various options. And, similarly, once having selected a particular rehabilitation avenue, the consumer should be encouraged to choose from a variety of experiences, consistent with level of development and service availability. However, once having made a choice to participate in a normalized adult-appropriate service setting, the consumer should expect us to provide an experience which approximates, to the greatest degree possible, the employment, recreational, or social relationships to be found in regular business and industry, and which will certainly await that person upon his or her eventual arrival in a fully integrated community setting.

 

The rehabilitation service system in general has gone to great expense and effort to recruit, train, and retain experienced and educated professional staff, so as to bring in to play a significant level of expertise in assisting individuals whose cognitive abilities are, by definition, substantially impaired. I would suggest that the intent of the system is not that these direct service and program staff are to act as benign bystanders in the rehabilitation process; but rather that they ought to play a very active and direct role in assisting the disabled individual to derive maximum benefit from whatever services are made available and subsequently selected.

 

Funds made available for rehabilitation services through tax revenues should not be viewed as the personal property of the service recipient. Rather, they ought to be considered as belonging to the taxpayers from whom they were derived. The State Department of Rehabilitation, the Regional Center System, and service providers, all have a fiduciary responsibility to assure that such funds are dispersed in a manner which is cost-effective, provides the greatest good for the greatest number, and which reflects the intent of the original legislative action.

 

In almost all cases, improvements in outcome performance throughout our nation are restricted by the level of skill, experience, and training which are possessed by direct service staff. This situation has two distinct components:

 

First, the levels of funding which are provided through State Departments of Vocational Rehabilitation and Developmental Services are such that, combined with mandated staffing ratios, they do not allow recruitment of direct service staff with preparation equivalent to that found in public schools, community colleges, and other similar entities.

Second, the staff members within our community-based service systems who do possess extensive post high school education and sophisticated skills are generally rotated quickly to positions which take them away from frequent direct client contact. These positions are attractive because the pay levels tend to be higher and working conditions more comfortable.

 

            Our agency outcomes management processes can address the above stated issues by tracking the amount of time which counseling and program specialists spend in actual contact with service recipients and setting target levels accordingly. Our general nationwide service system can, and should, begin the process of reforming the overall structure such that a much higher value is placed on the positions which actually provide the bulk of client teaching and training. Over time, and perhaps beginning with some pilot areas, we should experiment with models which vastly reduce paperwork loads on program staff so that they can devote more time and effort to consumer behavior uplifts in the vocational, social, and recreational venues which we provide.

 

 

            Carl Ochsner has served as the Executive Director of Work Training Center since July of 2000.  Prior to his appointment he was employed in various direct service, management, and administrative positions in six other agencies located in four separate regions of California. He is a Past President of the California Disability Services Association.

 

            Carl holds a Master’s Degree in Rehabilitation Administration from the University of San Francisco, a B.A. in Behavioral Science from Cal Poly Pomona, and a clear adult education teaching credential in vocational subjects. He can be reached at carlo@ewtc.org.