Some years ago I moved from the world of public policy and administration in developmental disabilities at the Human Services Research Institute to the world below—the world of front-line agencies actually serving people with developmental disabilities and others in need of publicly funded services and supports. I have come to appreciate, more than ever, the critical and difficult role these providers play in the resource-starved human services industry. It is this heightened appreciation, in contrast to the marked decline in appreciation among outspoken devotees of the self-determination movement, that has given rise to this writing.

Lunching with a respected colleague last month, I was taken back at her vision of developmental disabilities systems of the future—one that I have been hearing more and more often in the preachings of self-determination advocates. Support coordinators will help consumers, families, and others concerned choose among different self-employed support workers and locate the natural and generic resources integral to inclusion in their communities. “Fiscal” intermediaries will take care of the fiscal and administrative details involved. There will be little place for “specialized” providers as we know them in the world of self-determination. This, to me, is a frightening scenario, as it should be for most consumers and families who need services and supports upon which they can depend.

Dare we look at dark side of the self-determination picture? Historically, governments in the United States and other democratic countries take on about as much as public revenues allow. Abundant resources give life to new programs (i.e., constituent obligations); as resources dwindle, governments look for politically palatable ways to reduce these obligations. In the public health and human services arena, the pattern is for the higher levels of government to pass the responsibility for fiscally untenable programs to entities further down “the program food chain.” In order to make the responsibility do-able and acceptable, the entity accepting responsibility is given more control/freedom over how the resources will be managed and expended. Federal categorical programs become block grant programs in the hand-off to the states. State fee-for-service arrangements become capitated programs in the hand-off to “preferred” service providers or become self-determination programs in the hand-off to consumers and families.

No matter how you cut it—excuse the pun—in the end there are fewer resources available per person served and to those serving them. The greatest danger with the self-determination hand-off is underestimating the front-line organization and infra-structure required and overestimating the capacity of consumers, families, and communities to manage in resource-thin situations.

Faced with years of underfunding, repeated payment delays, and a myriad of stifling regulations and ever-changing certification, reporting, and billing requirements, providers have had to master a lot of survival skills. They have had to become adept at fund raising, at attracting and using volunteers, at recruiting from low-wage labor pools, and at coordinating cadres of part-time individuals in order to cater to the schedules of secondary wage earners and avoid paying full benefits. They have devised cooperative purchasing arrangements, shared training arrangements, and shared staffing arrangements. Further, despite an environment increasingly respectful of consumers and increasingly distrustful of providers, they have had to sustain staff morale and retain the core staff necessary to provide reasonably stable and safe environments. Maintaining quality services and supports for most individuals with developmental disabilities requires a level of organization and resourcefulness that loose affiliations of support coordinators, fiscal intermediaries, and natural supports simply cannot muster.

Call it “self-determination,” call it “choice,” but call it “less.” That creative service coordinators can do more with less given enough flexibility is an attractive but fanciful notion when presented as a system-wide solution. The idea has been oversold through the use of success stories involving exceptionally supportive families, friends, and/or communities. How many people or their families really want to, or are really capable of, managing all of their supports? A large segment of the population in public service are adults with families whose time is already taxed to the hilt. They have few friends. They live in disinterested communities. They are conveniently forgotten except by providers long left to their support.

The benefits of self-determination and integrally related systems of support can be substantial for some. However, it is just as disingenuous to undersupport individuals in the name of self-determination as it was to overserve individuals in the name of “active treatment” in the heyday of Intermediate Care Facilities for Persons With Mental Retardation (ICFs/MR). Look behind any movement that secures a place for itself in the perennially underfunded world of developmental disabilities, and you will find an economic engine. It is time we wake up to the fact that self-determination is increasingly being used as a cover for cutbacks in funding where it can be least afforded—among the front-line agencies upon which consumers depend.

Author notes

Author: John W. Ashbaugh, Vice President and Director of U.S. Operations, Danic Technology, Human Services Information Systems, 95 Warren St., Needham, MA 02492.