B Dissent and Response
PART1: DISSENT FROM THE REPORT OF THE COMMITTEE
Deborah A. Stone
I dissent from the majority report for two reasons. First, I think the general quality of the report is poor. It purports to be a comprehensive agenda for disability prevention when in fact it suggests only a narrow approach to the problem. The "Summary and Recommendations" is a bland consensus document whose primary goal is to avoid controversy. The recommendations are mostly ritual calls for more leadership, professional training, data collection, research, and public education. They neglect more concrete and direct social policies that could prevent and mitigate disabilities. Moreover, many of the report's major recommendations are not supported by empirical evidence and were not the product of any serious investigation by the committee.
Second, the process of studying the problem and drafting the report did not meet the institution's standards of scientific objectivity and freedom from political pressures. The sponsors and funders of the study asked the committee to prepare a broad agenda for disability prevention; however, they structured the task and exercised influence over the committee and staff so as to produce a report that would bolster their own political agendas.
Critique of the Report
The agenda suggested in the majority report is composed primarily of vague slogans (e.g., "enhance the role of the private sector," "critically assess progress") and calls for more research, training, education, data collection, and coordination. Only 7 of the 27 recommendations (nos. 16 through 22) would provide services directly to people who could benefit from them, or would directly prevent disability. The remaining recommendations call for more bureaucracy, more training programs, and more jobs for educated, middle-class, mostly nondisabled people.
The report fails to set an agenda or even to suggest how policymakers might go about setting one. It merely provides a long list of things that could be done, without any indication of the relative importance of the various disabilities or the relative effectiveness of the various prevention measures, or any discussion of how policymakers ought to think about evaluating these questions. The "conceptual model" of disability developed in the report (a model that has been around since 1969) is useless as a policy tool. It provides no guidance for setting priorities among the items in the "wish list" of new research, data collection, training, and services that the committee recommends, nor does it suggest any criteria for setting priorities among the many types of disabilities discussed in the report.
Although the report pays lip service in many places to social, cultural, physical, and legal barriers as causes of disability, there is no analysis of any of these factors in the report. Important topics that are neglected in the report include the following:
Handicap discrimination is now a major legal field, with federal and state statutes, a sizable body of case law, and scholarly studies of the nature and impact of discrimination as well as the usefulness and limitations of civil rights remedies. The report makes brief mention of the Americans with Disabilities Act but provides no analysis of how and to what extent job market barriers prevent people with impairments from working. Apart from recommendation 26, which calls only for educating the public about the civil rights of the disabled, not one of the recommendations deals with discrimination, or with defining, enforcing, or funding the enforcement of civil rights.
Although many statements in the body of the report recognize the importance of access to medical care in preventing disability, the only recommendation to deal with this problem (no. 16) calls for comprehensive health services for mothers and children. A recommendation for universal health insurance that had been in earlier drafts was dropped from the final report. No recommendation deals with access to health insurance for people with chronic disease and disabilities, despite the acknowledged severity of this problem in Chapter 8.
The report makes no assessment of major national efforts in adapting buildings and public transit for accessibility. (Four sentences in Chapter 4 assert that adaptive devices and environmental modifications are useful and essential components of a prevention program.)
There is no analysis of occupational causes of disability, although they are known to be important factors in injury and some chronic disease. The major national effort to prevent occupationally caused disabilities (the Occupational Health and Safety Act, in place since 1973) is ignored in the report.
There is also a major national effort to prevent what might be called secondary learning disabilities, in the form of the Education for All Handicapped Children's Act and the early intervention program added in the 1986 amendments to that law. The aim of these programs is to ensure that children with physical, developmental, and emotional deficits receive whatever services are necessary for them to derive maximum benefit from their education and to prevent their being handicapped later on in social, intellectual, and vocational skills. These two programs merit half a page in Chapter 4. The report neither evaluates the experience of these programs nor considers how to make better use of them to prevent disability.
Within the area of injury control, automobile safety programs, various methods to curtail drunk-driving, and gun control measures are extremely important aspects of disability prevention. Although the report mentions these measures, it does not examine the large empirical literatures relevant to them. Nor does the report simply recommend that programs be instituted in these areas, although, as I show below, the committee makes recommendations for major national programs in other, less controversial areas (research, education, and training) without examining the empirical evidence of need or effectiveness.
The report neglects (except for some cursory mentions with intense obfuscation) prenatal genetic testing, mass screening for genetic defects, and abortion of affected fetuses. I take up this topic in more detail below because it is the issue that most clearly revealed the politicization of the committee's deliberative process.
Bland as the recommendations are, there is still a puzzling disparity between the body of the report and its recommendations. Most of the report is concerned with epidemiological and clinical information of the sort that would be useful in designing primary prevention programs (i.e., preventing disability before it happens). Most of the recommendations, on the other hand, are aimed not at primary prevention but at developing the "infrastructure" for a prevention policy—that is, data bases, research programs, training programs to develop manpower, government leadership programs, and coordinating agencies.
The decision to focus the recommendations on infrastructure instead of
primary prevention appears to be a post hoc rationalization introduced half-way through the study process to relieve the committee of contentious debates about specific policies of primary prevention—for example, prenatal testing and abortion, gun control, national health insurance, and drug abuse programs. I say this because almost all of the recommendations that concern infrastructure are totally undocumented, and an examination of the body of the report shows that the committee spent no time collecting and analyzing information about infrastructural components. For example:
Recommendation 2 calls for an "enhanced role for the private sector," including advocacy groups, the media, voluntary agencies, philanthropies, and business. Nowhere does the report describe or analyze the current role of media, voluntary agencies, or philanthropies. Advocacy groups are mentioned a few times, notably the National Council on Disability, which cosponsored this study, but there is certainly no analysis in the report of the number, range of activities, or effectiveness of advocacy groups in preventing disability. The report mentions a few private employment programs for people with disabilities as good examples, but there is no inquiry into the scope of these programs, how many people they employ, whether they are cost-effective, and whether they have lasting effects.
Recommendation 15 calls for establishing a major, university-based training program for disability research. The report itself provides no information or analysis of the nature and scope of existing disability research and training programs.
Recommendations 23 and 24 call for upgrading medical education and training of physicians and allied professionals, but the committee made no inventory of existing training programs and curricula and the report provides no documentation that there is anything wrong with them. In several chapters, there are categorical statements to the effect that there is a shortage of personnel or programs, but no data are provided.
These recommendations (and others calling for more research and grants) easily found their way into the report's conclusions, not because they emerged from reasoned inquiry but because they offend no one. One might even say they benefit primarily the people who wrote them. In response to a previous draft of this dissent, a staff member replied:
Indeed, the Committee did not undertake a systematic review of all the disability research training programs. Rather, among the Committee members there are several who are major figures in disability research training in the U.S. Their testimony on this subject was thought by the Committee to be well informed and adequate.
This attitude is emblematic of what was wrong with the whole committee process. Instead of engaging in genuine empirical inquiry, the committee
accepted as evidence the informal opinions of its own members about a question in which they have a personal and institutional stake.
Critique of the Process
Many of the inadequacies and omissions detailed above can be explained by the process of study and deliberation that produced this report. The study was cosponsored by the Centers for Disease Control (CDC) and the National Council on Disability; funding came exclusively from CDC. I believe this sponsorship constrained the committee in some very concrete ways and led to a biased report.
The sponsors commissioned a report that would "develop a national agenda for prevention of disabilities." However, the Statement of Task they provided (see part 2 of this appendix) defined a limited set of approaches to disability prevention for the committee to consider. Moreover, it specified in advance of the committee's deliberations what some of the recommendations should be.
The statement of task set the structure of the report from the beginning by requiring a focus on data collection of the kind CDC already does. Three of the five tasks (nos. 1, 3, and 4) involved assessing traditional epidemiological information about the incidence, prevalence, and costs of disability. Two tasks (nos. 3 and 5) specifically asked the committee to "develop recommendations for" establishing a national surveillance system and applied research programs, and for a "strong, effective, coordinated effort for prevention of disability." One task (no. 2) asked for specific case studies of prevention activities in injury, chronic disease, and developmental disabilities, and two tasks (nos. 1 and 3) asked for a study of so-called secondary disability, or the additional disabilities that are sometimes caused by another disability. In addition, although CDC did not state this as part of the task, it really wanted the injury case study to focus on spinal cord and traumatic brain injuries, for which it already had a surveillance program, and it so informed the committee.
Thus, the committee was not free to examine the complex, multifaceted problem of disability and come to its own conclusions about which problems and approaches ought to have priority in the report. Indeed, a preliminary table of contents for the final report, based on the statement of task, was developed by the Institute of Medicine (IOM) staff and distributed at the first committee meeting. Also at that meeting, the committee was immediately divided into working groups corresponding to the chapter outline. Although it chose later to add the chapters on the conceptual model of disability and chronic disease, the committee never changed the structure of the final report from the original outline prepared before it had had any discussion.
The first recommendation of the report is that the CDC "assume the lead responsibility for implementing the national agenda for the prevention of disability." Yet, as is evident in the body of the report, the committee never considered the relative merits and disadvantages of locating a national prevention program in the CDC as compared with other agencies. For example, it did not discuss the implications of locating leadership for a disability prevention program in the Office of the Surgeon General (traditionally thought to be the chief disease prevention agency) or of locating it in a health agency as opposed to a Labor Department agency (e.g., the Occupational Safety and Health Administration) or a Justice Department agency (e.g., the Office of Civil Rights). Arguably, these and other agencies have as much experience with disability prevention as the CDC—albeit in nonmedical models of disability prevention. To my knowledge, the CDC never asked explicitly to be cast in the lead role, but the fact that the committee did so unreflectively, with no research into the question, suggests that the committee was operating under the strong influence of its sponsor.
Beyond the design of the task, the CDC constrained the committee in more immediate ways as well. CDC representatives attended the committee's meetings and occasionally indicated their satisfaction or dissatisfaction with the direction of the discussion. Committee members were told explicitly in one meeting that the CDC wanted a report they could "wave on the Hill" to demonstrate their need for larger appropriations.
Early in the course of the study, I was concerned that the emerging report neglected the whole topic of prenatal diagnosis and abortion. I made a presentation to the committee documenting the importance of access to contraception, prenatal diagnosis, abortion, and prenatal care in the prevention of developmental disabilities. During the discussion of my presentation, a representative of the CDC told the committee, "We don't want a report that is controversial."
Nevertheless, with the encouragement of staff, I drafted a piece about these issues for the report. Besides being read by the entire committee, the piece went back and forth between me and the staff for substantive editing. During one of these exchanges, I discovered that these drafts were being "blind copied" to the CDC. When I made this charge in an earlier draft of this dissent, the IOM staff produced a memorandum about the abortion draft on which the sponsors of the report were blind copied. The staff maintain that only an "informational" memorandum and not drafts of the abortion section were passed to the sponsors. I, of course, cannot prove exactly what pieces of paper were circulated to sponsors, but clearly some communication between committee staff and sponsors was concealed from committee members. Moreover, the staff indicated to me in phone conversations during the course of the study that the sponsors were "concerned" about my draft and wanted it "toned down," suggesting that committee staff were engaging in discussions
about the content of the report with the sponsors. Regardless of how much was actually blind copied to the sponsors, one must ask why there was any blind copying at all during the course of this study. Is there any place for secrecy, for concealing communications between staff and sponsors, in a genuinely scientific deliberative process?
The topic of abortion is controversial, and was especially so during the period of this study, but it is nevertheless highly relevant to the report and to a prevention agenda. Genetic testing, prenatal diagnosis, and abortion of affected fetuses are already being widely used to prevent the birth of children with severe disabilities. Given the rapid pace of development of genetic technology, and the gap between our ability to detect serious diseases and to cure them, this trend will continue. As welcome as these techniques are to many parents and public health advocates, they are very objectionable to some in the disability rights community, as well as to people who oppose abortion on any grounds. Prenatal genetic testing, mass screening for genetic defects, and abortion of affected fetuses have been major topics of debate in both the scientific and popular press, and they will continue to be important topics in the 1990s.
These controversies should be acknowledged and discussed, not ignored, in an agenda for disability prevention. A genuinely deliberative and scientific research effort would have sought more information and discussion rather than suppressing the whole topic. In my draft, I documented extensively the connection between access to prenatal care, prenatal testing, and abortion on the one hand and reduction of disabilities on the other. But instead of building on this draft, the committee and the Institute of Medicine suppressed it. There are a few brief mentions of the topic, almost hidden in the report, in such phrases as "genetic screening and counseling and associated services," or "pregnancy termination." Yet there is not so much as a single full paragraph devoted to this topic, although recommendation 17 expresses the committee's "belief" that "prenatal diagnosis and associated services, including pregnancy termination" should be available to all women. Unfortunately, this recommendation, like so many others, is not supported by any analysis in the body of the report.
It is hard to say exactly why the topic of abortion was virtually omitted from the report. Many committee members were acutely uncomfortable with the extensive discussion of abortion. Some of them, as well as one of the sponsors (the National Council on Disability), were strongly opposed to the idea that prenatal testing and abortion might be used to prevent the birth of people with disabilities. Others were opposed to discussing abortion in this report because the topic is so controversial that it might deflect attention away from the rest of the report. One committee member strongly opposed use of the word "abortion" in the report and wanted the term "pregnancy termination" substituted instead. And of course the other sponsor, the CDC,
made it plain during a committee meeting (if not in private meetings with committee staff) that it did not want anything controversial in the report.
I believe that the Institute of Medicine, as a scientific advisory body, should inform policymaking bodies about the scientific aspects of controversies and leave the ultimate political decisions to appropriate political bodies. Because this committee was so concerned about avoiding controversy, the report fails to educate policymakers and the general public about the most basic scientific aspects of the abortion and disability controversy.
This point is important beyond the Committee on a National Agenda for the Prevention of Disabilities. If a study committee of the National Academy of Sciences is prohibited from reporting, is afraid to report, or is pressured out of reporting on relevant but highly controversial aspects of a scientific and social problem, it and the Academy lose their integrity as scientific bodies.
PART 2: THE COMMITTEE'S RESPONSE TO THE DISSENT BY DEBORAH STONE
The preceding dissent to the report of the Committee on a National Agenda for the Prevention of Disabilities focuses on two matters: (1) the quality of the committee's report and (2) the possibility that inappropriate influence by the sponsors of the study could have constrained the committee's ability to act independently. In regard to the first matter, the report itself stands as the committee's response to Dr. Stone's critique. We believe that the study that this report documents fulfills the charge given to the committee by the Institute of Medicine and that the report has the potential for making substantial contributions to the field of disability prevention. We do, however, address below two specific points relative to the report's quality that were raised by Dr. Stone.
As to the second matter, we, the remaining 22 members of the committee, believe that Dr. Stone's criticisms of the committee process lack an informed basis—she is unable to judge what transpired during the committee's tenure because she did not participate in its deliberations. She attended only two of the six meetings of the full committee—the first and part of the third—and none of the additional six subcommittee working group meetings. At the third meeting (July 31, 1989), Dr. Stone presented a paper that she had written on her proposal for a national agenda for disability prevention. A large portion of her paper concentrated on calls to keep abortion legal, require Medicaid programs to pay for abortion, implement gun control policies, and establish some form of national health insurance. Her covering note stated, ''I'm sure not everyone will agree with my views, and it may be that I will want to write a minority report to accompany the main committee report" (emphasis added). Although we were led to believe that she would
continue to participate in the committee process, and help address the issues raised in her paper, Dr. Stone attended no other committee or working group meetings. In an effort to accommodate her schedule and focus on her concerns (primarily the abortion issue), the committee even set up a special working group meeting, but at the last minute Dr. Stone was unable to attend.
The committee process Dr. Stone criticizes so strongly is a slow, often arduous consensus-building exercise in which a group of experts study an issue as outlined in the statement of task, or charge, provided to them by the Institute of Medicine. Their findings, conclusions, and recommendations are then gathered together and presented in a report, which is subject to independent critical review by an anonymous group of authorities in the field at issue, appointed by the Institute of Medicine and the National Research Council. Such scrutiny is required before a report is approved for release to ensure that the committee has addressed its charge appropriately and substantiated its conclusions and recommendations.
The committee process is notable for the extent of its discussions, debates, and even arguments about available evidence and the conclusions to be drawn from it. Committee members are selected to bring varying points of view and so contribute to a broad perspective on the problem at hand. But in the consensus-building process, these views are often shaped, and—in the best sense—"influenced," not by sponsors, who take no part in the often heated give-and-take of committee deliberations, but by the ideas and opinions of other experts who bring their combined knowledge and understanding to bear. Dr. Stone's lack of participation in this process appears to have led to her misconception of the role played by study sponsors and her view of their ability to constrain the committee's conclusions and eventual recommendations. In the case of our committee, although sponsor representatives attended some meetings, they participated only as resources; when appropriate, they were excused from meetings so that the committee could discuss issues in their absence. Moreover, sponsor representatives did not attend working group meetings, during which most of the recommendation formulation work was carried out. The character, organization, and substance of the report clearly reflect the work of committee members alone; in addressing the committee's Statement of Task (see box) we made decisions about the content and organization of the report and how each point should be presented. The process was fair, and members' participation was broad and vigorous. No other committee member besides Dr. Stone, whose experiential basis for judgment must be considered extremely narrow, experienced feelings of constraint or pressure from the sponsors.
Much of Dr. Stone's critique of the process stems from her displeasure with the committee's handling of the abortion issue and the revisions that were made to the paper she submitted. She implies that the Centers for
STATEMENT OF TASK
The National Academy of Sciences/Institute of Medicine, through the Division of Health Promotion and Disease Prevention, will conduct a twenty-two month study to develop a national agenda for the prevention of disabilities. The study is to consider prevention and intervention strategies, emphasizing applied research in the development and evaluation of preventative interventions, rather than basic research. In conducting the study, the IOM shall:
Disease Control (CDC), one of the sponsors of the study, was somehow involved in revising her paper and removing "abortion" from the report—but she concedes also that she has no evidence for such a charge. Indeed, as Dr. Stone notes, some committee members expressed concern about the political realities of recommendations on the subject of abortion and the potential for their affecting the impact of the entire report. What Dr. Stone does not comment on, because she was not present for most of it, was the intense discussion of this issue among committee members at several points and the process leading to the consensus that was finally achieved, merging broad and opposing views (see recommendation 17 of the report, which
calls for providing access to effective family planning and prenatal services, including pregnancy termination). CDC never exerted any pressure to remove material from the report or to influence the findings of the committee. As for the blind-copied correspondence Dr. Stone mentions, we consider this merely an expeditious method for informing the sponsor of the status and progress of the committee's deliberations—not an attempt to conceal information. The information conveyed in that correspondence was routine and nonconfidential, and in no way violated the confidentiality of committee deliberations or led to constraints in its independence of action.
Dr. Stone raises two other troubling points that we believe should not go unaddressed. First, with respect to her allegation that recommendation 1 in the report was made "unreflectively," we must once again note that Dr. Stone did not participate in the discussions that led to this recommendation and therefore has no knowledge on which to base this judgment. In addition, the committee was asked not to assess the disability-related programs of all federal government agencies but instead to "recommend a system for the development of a strong, effective, and coordinated effort for the prevention of disability." In executing this part of our charge, we came to realize that, far from showing preference for a sponsor, we had developed something of a bias against recommending CDC leadership in order to avoid any appearance of unwarranted preference. Objective consideration, however, of the merits of CDC leadership (its demonstrated strength and success in prevention activities through epidemiology, surveillance, and technology transfer, and its emphasis—unlike most other federal disability-related programs—on prevention rather than service delivery or rehabilitation research) led to the committee's recommendation that the existing Disabilities Prevention Program at CDC be expanded to serve as the focus of a National Disability Prevention Program.
In arriving at this judgment the committee called on the expertise and knowledge of its members to compare administrative structures and operations of some of the federal agencies that might accommodate a National Disability Prevention Program. Among our ranks are a former U.S. surgeon general and assistant secretary for health, a former director of the National Center for Health Statistics, and two former directors of what is now the National Institute on Disability and Rehabilitation Research. As is common in considering the organization, coordination, and development of federal programs, the committee relied on these experts to provide first-hand experience in these areas and supplement the limited documentation available in the public domain.
A second point Dr. Stone raises regarding the quality of the report is that of the strategy developed by the committee to formulate the national agenda on disability. As background to this matter, it is important to understand that most of Dr. Stone's substantive comments and recommendations focus on primary prevention—for example, prenatal testing and abortion, gun control,
and national health insurance. The committee, however, decided to take a different approach. As the preface of the report notes,
[t]his report goes beyond the traditional medical model to consider and address the needs of people with disabling conditions after those conditions exist and after they have been "treated" and "rehabilitated." Prevention of the initial condition (primary prevention) is certainly important, but the emphasis in this report is on developing interventions that can prevent pathology from becoming impairment, impairment from becoming functional limitation, functional limitation from becoming disability, and any of these conditions from causing secondary conditions. Theoretically, each stage presents an opportunity to intervene and prevent the progression toward disability. Thus, the report sets forth a model developed by its authoring body, the Committee on a National Agenda for the Prevention of Disabilities, that describes disability not as a static endpoint but as a component of a process.
One impetus for the committee's decision on its approach came from the sheer size of the charge it had to address. We decided that perhaps the best contribution we could make was to, first, describe the significance and magnitude of disability as a public health issue; second, describe a conceptual framework for consideration of disability prevention, taking into account quality of life and the strong emphasis the committee wanted to give to the social and other risk factors so essential to the causes of disability; and, third, develop recommendations that would serve as an infrastructure for a national program for prevention. By infrastructure, we mean the leadership, coordination, surveillance, research, personnel development, and public support needed for such a program, which would provide a framework for a long-term, comprehensive, and coordinated effort involving specific interventions. Thus, we did not formulate exhaustive lists of interventions for each area of disability addressed in the report (although the "focus chapters" on developmental disability, injury, chronic disease, and secondary conditions do present information on various types of intervention strategies, including some primary prevention, and their development status or proven effectiveness). Indeed, it is the report's focus on secondary and tertiary prevention that helps to set it apart from many other efforts in the field and, we believe, constitutes a major contribution to disability prevention for those individuals who already have potentially disabling conditions.
It is regrettable that Dr. Stone chose not to continue active participation in the committee and contribute more fully to its work. Many of the points she raised in her July 1989 paper appear in the report; see, for example, the recommendations on access to care in Chapter 9. Her views undoubtedly would have been better served, however, by fuller participation in the collegial deliberative endeavor that is the hallmark of this institution's consensus-building committee process.