Ashbaugh (2002) raised several important points in contributing to the evolution of self-determination in the lives of people with developmental disabilities. Here, we offer an extension of one of those points and a response to another.
We agree that one of the keys to offering good, on-going supports to people with developmental disabilities is flexibility in the day-to-day provision of those supports. Ashbaugh correctly pointed out that agencies have become adept at creative ways for discovering, arranging, and delivering those supports. One aspect that we believe was implied in his comments, but that we would like to make more explicit, is the requirement for sensitivity to people's ever-shifting support needs. No one who has worked for any length of time in providing community supports has any delusions as to how support needs can change, literally over night, as a result of illness, job loss, death in a family, or loss of other social supports. Agencies respond to constantly changing needs for assistance by moving support among people within an agency.
For example, one agency with which we are familiar in the state of Washington supports 29 people to live in their own homes. Each person has an individual amount of both support hours and funds provided by the state. Some people have as few as 7 to 8 hours per week, whereas others, as many as 16 to 18 hours per day. This is the way supports are provided in our state as well as many others. We further contend that few, if any, people are receiving exactly the number of hours contracted for on any given day. What actually happens is the hours go where they are needed most and in such a way that everyone gets the support they require each day. This is the system's elasticity or flexibility.
The agency we speak of is moving closer to implementing procedures that more closely involve the people receiving supports in decisions about support allocations. The agency can do this because it is in a support relationship with only 29 people under one contract. If, however, each person had their contracts held individually, re-allocation of support resources would be considerably more complex. How would services set up through brokers, with all individual providers, still be able to accomplish this level of flexibility and responsiveness to constantly changing support needs? Certainly, “risk pools” that retain some portion of available support funds for distribution to people when their needs change have been mentioned; but this would be cumbersome and not as likely to facilitate responses with the sensitivity of the current arrangements. Although this is not a fatal flaw in thinking about self-determination efforts, it is one that does not seem to be adequately addressed.
Asbaugh (2002) also pointed to the lack of empirical evidence supporting many of the basic assumptions offered in arguments for self-determined systems of support. Why are we not expecting that such information be published in peer-reviewed journals? Where are the studies conducted in support of the contentions made for the effectiveness of self-determination? Certainly, we do not need research to tell us what is moral or ethical: People with disabilities should be in charge of their own life. How to best position service delivery systems to make this a reality is, however, in our opinion, still in need of empirical demonstration. Take, for example, Ashbaugh's question about how many people or families want to manage or are capable of supervising all of their supports. Certainly, this is critical information that is necessary in order to develop such a system. To this we offer some data.
For the past 4 years, families in the state of Washington have responded to surveys containing a variety of questions about the supports they receive. Some of those questions were about the control the family exerts over service decisions. Families responding to these queries were divided into two groups: those whose adult child (over 18) still lived at home and those whose adult child was no longer living in the family home. In surveys conducted in the year 2000, 441 families whose adult child with disabilities still lived with them responded, as did 504 families whose adult child was living away from the family home. In the 2002 surveys, 425 and 423 families, respectively, responded with regard to questions about control of services. The following means applied: 81.3% of families whose adult child lived out of the family home expressed satisfaction with the current level of control of services; 8.4% wanted more control over selecting service providers; 9.2% wanted more control over staff; and 1.1% wanted as much control as possible, including managing all funds. For families whose adult child still lived in the family home, 70.6% were satisfied with their current level of control of services; 10.7% wanted more control over the selection of providers; 13.6% wanted more control over staff selections; and 5.1% wanted as much control as possible, including managing funds.
Clearly, the overwhelming majority of families responding to those surveys did not desire extensive changes in the control of services, and those who did express such a desire wanted more control over the selection of providers and staff, with very few seeking to control the actual service dollars. We speculate that perhaps what those families want more then control of funds is the portability of funds. By this we mean the ability to move dollars from one support provider to another as the need or desire arises. This would still require that funds be in the form of individual budgets, but without the need to directly manage all aspects of the daily use of those funds. The result is still greater control for those who desire it but without the need to provide direct management of the funds by the individual or family. Families could direct the funds to different agencies, especially if they feel they are not exercising the degree of control they are comfortable with, for example, in staff selection.
There was also a notable difference in the responses of families whose child was still living at home to want as much control as possible. They indicated this desire at nearly five times the rate as did the families whose child had moved out of the family home (5.1% vs. 1.1%, respectively). Although speculative, could it be that families whose adult child still lived with them were more likely to want greater control because they received fewer services? Does degree of frustration with enrolling in services play a role in how much control is desired?
Of course, we recognize that asking families these questions is not the same as asking people with disabilities themselves. However, we still consider these data of value for at least two reasons: (a) Many of the families responding to the surveys were legal guardians and did control service decisions to some extent. (b) Even if not in the position of guardianship, many of those families undoubtedly had some degree of influence on the choices their adult child might make. We would certainly like to see the responses of people with disabilities to those same questions, but until those are available, we believe these data shed some light on the question of how many people or families want more control over service decisions.
Offering any voice that may be perceived as expressing doubts about a popular concept can be dangerous. One may be thought to be opposed to those ideas and be labeled as an obstructer of progress toward the implementation of the ideas. We offer our comments, as we believe Ashbaugh did, with the hope to further the discussion of how to support people with developmental disabilities to assume control of their own life while at the same time ensuring the continued quality of supports provided to them.
Authors:Lyle T. Romer, PhD, Executive Director (firstname.lastname@example.org), Total Living Concept, PO Box 488, Kent, WA 98035. Mary Richardson, PhD, Professor, Elizabeth Aigbe, MS, Research Coordinator, and Alice Porter, MSc, Research Editor, University of Washington, Center for Disability Policy and Research, 146 N. Canal St., Suite 313, Seattle, WA 98103–8652