Sarah Kathleen Barnhill, University of North Carolina, Chapel Hill, NC, Jarrett Barnhill, M.D.
The movement to close large, state-run residential facilities for people with intellectual disabilities is gaining momentum in many areas of the US. The underlying belief is that individuals with intellectual disabilities, like those with mental illness, are better served in their communities (Gob, 1985; Lamb 2001b). Although there is a growing body of legal precedent (including the U.S. Supreme Court ruling on L.C. v. Olmstead, 1999) to support this movement, some southern states are lagging in this process (Reeve, Aceves, Morales, Thorne-Lehman, & Vickers, 1998; Smith et al 2001). This movement represents a sea change from the traditional approaches to the treatment of individuals with intellectual disabilities. In the late 19th and early 20th century, the progressive philosophies preached the need for facilities for training and treatment of children with disabilities. Residential schools for training were the preferred method of intervention. At that time, the cultural forces that contributed to institutionalization reflected a different view of people with intellectual disabilities (Noll, 1995).
Scientific and legal attitudes have changed faster than the social values about the functional role of these facilities. This dissonance contributes to a conflict between traditionalist social values and advocacy issues. The ensuing debate has brought issues such as conservative politics, community values, social change, and attitudes towards social reformers into the picture. Unfortunately these cultural forces are frequently overlooked or undervalued in this debate. Instead the discussion focuses on issues such as the prohibitive start-up costs or complaints of unenlightened legislators and public officials.
These complaints persist in spite of the transformation of traditional, rural southern culture brought about by demographic change, increased educational levels, and social diversification. Even in the New South, the pace of change is still affected by social as well as fiscal conservatism (Johnson, 2000; Murphy, 2001). In many southern states with large rural populations, traditionalism and conservatism continue to shape state and local politics. This paper explores several layers of social and cultural influence on the pace of de-institutionalization. We present this material to provoke discussion rather than offer a definitive analysis of this complex social issue.
Eugenics, Fatalism and Institutionalization:
Facilities for people with intellectual disability were developed at a time when the prevailing scientific attitudes expressed a sense of underlying medical fatalism and eugenics. At that time there was a paucity of accurate medical knowledge which contributed to a prevailing belief that people with intellectual disabilities were trapped by their disabilities (Carlson, 2000). This reality was compounded by a widespread cultural belief system that included a fatalistic view of misfortune and illness- it is in the Lords hands, or it is Gods will (Cash, 1941; Reed, 1974). Many local health care providers shared this sense of fatalism (Warner, 1985). As a result, health care providers tended to encourage parents of children with developmental disabilities to place their children out of the home. Early placement might maximize the potential for training and some form of education for higher functioning children (Noll, 1995). Although initially excluded from the training models, people with severe disabilities would eventually enter the system. For these individuals, lifelong placement was likely. Such a placement would also ease the psychological strain of caring for uncontrollable seizures, untreatable illness and premature death (Brunnicks, Thurlow, Thurman, & Fiorelli, 1985). Early placement was also viewed as more humane since it would minimize emotional attachment to a defective child. The prevailing philosophy asserted that limiting psychological attachment was easier on the family (Noll, 1995).
The role of the eugenics movement is more complex. By the time this concept trickled into the folk culture, moral depravity became inextricably linked to intellectual disability. This social perception resulted in policies that focused on institutionalization as a means of not only protecting people with intellectual disability from the evils of society but also protecting society from antisocial behavior, promiscuity, and criminal behavior associated with intellectual disability (Noll, 1995; Selden, 2000). These misconceptions were shaped by theories that moral depravity followed simple patterns of inheritance and a deepening pre-occupation with preventing overpopulation by less desirable elements (Carlson, 2000). The eugenics movement was also based on concerns about the fertility and reproductive capacity. The latter contributed to fears of uncontrollable population growth of undesirable people (intellectual disability) and a threat to civil society and the gene pool. In order to protect society, people with intellectual disabilities should not be allowed to produce offspring. Involuntary sterilization or institutionalization would prevent the rampant reproduction and the accumulation of mental defectives. These beliefs were codified by legislation and Eugenics Boards were created. These boards persisted in some southern states well past the middle of the 20th century. Their longevity suggests the staying power of this ideology (Lombardo, 2000).
What Was a Family to Do?
Why did many families acquiesce to the philosophy of placement? One explanation may have involved paternalism. In many rural areas, there was a strong conviction that local doctors, teachers and other professionals knew best and their decision always took the familys best interest to heart. This attitude fit nicely into a southern society that was accustomed to being advised and led by local officials with more education and higher social status (Cash, 1941; Murphy, 2001). In addition, many parents also struggled with guilt over the defective child (Solnit, 1961). The range of guilt and sadness about having a developmentally disabled child also fit into a religious belief system that viewed such children as a warning, sign, or even punishment from God (Reed, 1974). Although subtle and more covert, this underlying religious belief could generate additional pressure to comply with the paternalistic recommendations. These factors along with individual psychological issues frequently resulted in sending the child away and trying to put him/her out of mind (Olshansky, 1962).
For many families the possibility of the child remaining at home was limited by a lack of local training, educational or treatment programs. Keeping the child or adult at home left the families marginalized and totally responsible for services (Noll, 1995). In earlier times, a large extended family would help out as much as they could, but unfortunately out-migration of educated young people left behind aging, widowed parents, or designated siblings to provide basic services. These demographic changes resulted in an aging population of impoverished caretakers as well as a smaller tax-base to support community programs (Johnson, Beale, Gurwitt, & Turner, 2000). For many, a dwindling support system contributed to an admission to the state training (residential) facility.
Over time the programs changed and the original mandate to train was replaced by a need to isolate and segregate (Dean, 1976). As a result of changing social policies, it became increasingly unlikely that once an individual was admitted that he or she would return to their community of origin. Over time, changing admission policies resulted in the accelerated growth of the institutions (Brunnicks et al., 1985). Institutions that began as safe places for time-limited training in agricultural arts of higher functioning individuals were transformed by admission policies that were shaped by societal ambivalence, lack of clear-cut legal definitions and rights, and legislative penury. Admission policies expanded to meet the challenge of people with more severe impairment and for antisocial, immoral, promiscuous and depraved behaviors. The age range also expanded (Noll, 1995). Paradoxically, the institutions also grew as the result of improved medical care, higher survival rates for children, and increased longevity.
Unfortunately, overcrowding further burdened in-house resources, personnel resources and available state funding (Noll, 1995). As a result the culture of the institution seemed to gradually change from institutions for training into custodialism (Greenblatt, 1976; Katz, 1992). Custodial attitudes emerged in facilities where the institutional culture is shaped by low per capita expenditures; large in house populations; minimal social interaction between staff, professionals and clients; and compromised efforts towards habilitation. Direct care staff were overburdened, undertrained, and underpaid, as well as also imbedded in a rigid hierarchy of clinical decision-makers. Decisions came from superintendents or equally overburdened professionals who had limited resources and working relationships with direct-care staff or residents. The gap in status between professional staff and direct care workers resulted in top down decision-making process and restricted information exchange and any semblance of teamwork. These institutional factors compromised morale and the social supports (Herschel, 1992; Katz, 1992).
One of the tragedies of this system involved the transition from humane care to an increasingly dehumanizing institution where people with developmental disabilities could be put away. Like prisons and mental hospitals, the residential facilities assumed a segregating function (Dean, 1976; Kessler, 2000; Lamb & Weinberger, 2001). But unlike prisons and mental hospitals, facilities for the intellectually disabled were not designed to confine unmanageable or dangerous people. In some cases, inappropriate admissions of higher functioning residents occurred because of the linkage between intellectual disability and antisocial or depraved behavior (Noll, 1995). Over time the population of more severely impaired individuals increased and further complicated attempts at training. As a result, there was a heterogeneous population of individuals with a broad range intellectual disabilities, dangerous or disruptive behaviors, and home communities that were increasingly reluctant to have the residents return. In many instances the distinction blurred between prison, mental hospitals, and institutions for people with developmental disabilities. In addition, all three institutions fell prey to an out of sight, out of mind status- what went on in these custodial facilities was out of public eye as well as the consciousness of elected officials.
The psychopharmacology revolution of the 1960s and 70s created another paradox. It was now possible to treat most psychiatric patients. As a result, psychiatric hospitals were depopulated and many patients were returned to their communities. The psychopharmacology revolution also contributed to the rise of the community mental health movement and the belief that large state facilities might be eliminated altogether (Greenblatt, 1976; Lamb, 2001a; Lamb, 2001b). This miracle remains unfulfilled because of a residual population of institutionalized patients who are noncompliant with treatment, violent or aggressive, appear intolerant of family or community placements, or treatment refractory (Lamb, 2001a).
Unfortunately, people with intellectual disabilities had no revolution in treatment for their developmental disorder. Rather than open the doors to residential facilities, the psychopharmacological revolution may have allowed for even larger institutions. The introduction of psychotropic drugs for behavioral control translated into more efficient management of disruptive behaviors. This change in treatment productivity enhanced the carrying capacity of institutions by numbing the effects of overcrowding and inadequate or nonexistent programming. Unfortunately better living through chemistry, did not result in a rapid increase in community programs for people with intellectual disabilities. Out of sight, out of mind remained a core value (Reeve et al., 1998; Smith, Prouty, Polister, Kwak, & Lakin, 2001).
This picture changed with the rise of vocal advocacy groups for people with developmental disabilities (Reeve, 1998). This message included ideas such as inclusion and civil rights, and reflected a growing awareness that the scientific folklore (including eugenics movements) regarding intellectual disabilities was wrong (Carlson, 2000; Lombardo, 2000). The dominant ideology was that warehousing without programming or community-based services was detrimental to development and psychiatric health. These advocacy groups also increased public awareness and cracked the shell of the out of sight out of mind mentality. This great re-awakening resulted in institutional modifications as well as a resurgent interest in community-based programs (Brunnicks et al., 1980). This process was pushed along by the rise of regulatory agencies such as Human Rights Committees, ICF/MR, or HCFA (CRIPPA) oversight of behavioral and pharmacological therapies. Unfortunately, the development of community programs continued to lag. Although start-up costs were common concerns for legislators and tax conscious voters, cultural factors were also operating behind the scenes (Reeves 1998).
Civil Rights Movements and Social Change
Social change is a process that transforms traditional ways of thinking and doing things. Many people in traditional societies resist cultural change and struggle to deal with the psychological tension created by the process (Cash, 1941; Reed, 1974). Examples of this process include the reawakening or intensification of older values (the good old days), ideologies to slow the pace of change, and more direct challenges. The Civil Rights movement illustrates the tensions and psychological reactions to social change (Halberstam, 1993). The movement to de-institutionalize state residential facilities for the intellectually disabled appears to be a similar but much less tumultuous and violent process.
Prior to the 1960s southerners lived in a racial caste system, sanctioned by Jim Crow laws and maintained by a range of unwritten social rules and threats of violence (Reed, 1993a). Segregation expressed a traditionalist view, conservative politics, and reluctance to embrace social change. Within this tradition, there were variations on two streams of thoughtgradualism and segregation now and forever. These differing philosophies came to media attention after the U.S. Supreme Court ruled on Brown v. Board of Education and subsequent federal push for large scale integration (Halberstam, 1993; Reed, 1993b). The most vicious, reactionary forces were violent and blatantly racist. The violence startled nation the but clearly showed that disenfranchised southerners viewed desegregation as an extreme threat to themselves and their views of a southern way of life. For these people, elimination of the black caste system threatened a system of social roles, pattern of interaction, and distribution of power. Defending southern honor was crucial (Reed, 1993a; Johnson 2000).
The second reaction involved a moderate political viewpointgradualism. Adherents believed that gradual changes in de jure segregation would be less tumultuous if the pace of change was better suited to the southern way of doing things. This political philosophy assumed that African Americans would tacitly follow the paternalistic tradition of the old politics. Unfortunately this viewpoint contrasted sharply with the push for desegregation enjoined by southern African-Americans. It was difficult for many moderate southerners to accept this reality. Another explanation was needed. The only people who could stir up local African-Americans (our people) were outside agitators or communists(Reed, 1993b).
Many moderate southerners also felt that the growing pressure from faith-based organizations, the courts, and the Federal government represented a callous disregard or insensitivity to our situation. These outsiders were not aware of local needs and ways of doing things. They were intent on imposing change at a pace that the local white population found intolerable. Federal court orders, troops or national Civil Rights legislation also convinced some that the region and culture were under siege. Politically, an undercurrent of resentment accompanied a feeling that these outsiders were telling us how to run our towns and local governments (Reed, 1993a; Murphy, 2001).
Politics and the Law versus Culture
Those advocating for de-institutionalization have the advantage of less passionate resistance and a generation of previous social change. Since the late 1950-60s there have been significant demographic changes in the south. Urbanization and the influx of northerners into the Sun Belt have increased cultural diversity. In spite of these population changes and dilution of many traditional southern values, the region remains politically conservative (Johnson, Beale, Gurwitt, & Turner, 2000). Even though gradualism has been remodeled into compassionate conservatism, the underlying ideology still influences the pace of institutional change. Advocacy groups who clamor for rapid institutional reform collide with these historical and cultural undercurrents. Their pushiness alienates many folks who still resent outsiders attempting to impose their will.
George Wallace, Richard Nixon, Ronald Reagan, and now George W. Bush masterfully adapted to this undercurrent. Nixons southern strategy began a fundamental shift away from yellow dog Democrats to conservative Republicans. A well-crafted distrust of liberals and advocates of social change has become the mantra of the conservative, political mainstream. In terms of social values, there is a gut level aversion to the L-word- an obscenity in some circles (Johnson et al., 2000). It is no accident that these conservative movements also draw heavily from fundamentalist Protestants (Reed 1974). Pat Buchanan upset many moderates at the 1992 Republican Convention when he referred to ongoing war over the soul of America. His words resonated with many southern Protestants who felt besieged by social engineers and secular humanists (Johnson et al., 2000; Murphy, 2001).
Other values and attitudes play a significant role in the de-institutionalization debate. To many traditionalist southerners, common sense, family name, and place of birth carry greater weight than academic credentials (Reed, 1974). In the world of political debate and advocacy, the opposite may be true. In addition, many potential supporters are also turned off by what they perceive as the self-righteousness of advocacy groups. Their air of moral and intellectual superiority and confrontational style of politics does not sit well. The legalistic viewpoint of many advocates is also alien to a people who still idealize personal relationships rather than contractual (legalistic), impersonal ways of doing business. Local politics is profoundly shaped by these values (Cash, 1941; Reed, 1993; Murphy, 2001).
In addition, being told how to deal with local problems conflicts with sensitivities and creates a perception that advocates are dismissive of local needs and values. The mindset that we are right and know what you need to do is not popular. To many, the belief is that advocates who do not know their programs are passing negative judgments on our facilities. This perception fuels a defensive reaction. As a result the advocacy groups may be classified and dismissed as a new generation of outside agitators, or as L-word (Reed, 1974; Murphy, 2001).
Institutions Are More Than Buildings
To local folks (constituents of elected officials), these institutions are more than treatment facilities or warehouses. This place or institution is a part of the psychological geography of the region. Psychological geography of a place is defined by the history of the family ties and emotional attachments to the facility. Devaluing a place as backwards triggers an emotional reaction that is sometimes as intense as a personal insult. When perceived through the prism of culture, these negative appraisals of our places are also an attack on the surrounding community and in some sense, the southern way of life. Our institution is an organic part of our history and sense of belonging to the region (Cash, 1941). Added to this psychological mix is localismthe sense that the local program is superior to others and especially those outside the south. To portray our institution as a throw-back or inhumane also arouses the passions of the localist (Reed, 1974).
Unfortunately psychological geography and localism are rarely included in the debate over residential institutions. The ensuing political and ideological mismatch results in miscommunication and lack of mutual understanding. In this climate, any attempt to win debating points is an ineffective way of addressing the conflict. The local reaction to these charges is frequently they dont know about our place. Unfortunately, open challenges to this attitude evoke a complex, often unconscious, barrier to communication that can quickly stifle thoughtful discussion (Reed, 1993). This reaction to a sense of being pushed reminds these authors of George Wallaces dramatic (and televised) stand against integration of the University of Alabama. The recent furor over the use of Confederate battle flag atop the South Carolina capitol evoked a similar defiant reaction. Both issues evoked an emotional, quasi-religious response and not a groundswell of support for an abstract legal concern.
Disregarding these cultural factors and not considering the sense of rebelliousness may be a strategic mistake. Persistent confrontational approaches may further alienate rather than energize people for change. The last thing advocates for people with intellectual disability need is to have the debate reframed in terms of liberals, social engineers, or secular humanists pushing change onto local folks. The list of protagonists may expand also include Godless or atheist and bring religion into the battle (Murphy, 2001). This sort of reaction may also impact the political process. County elected officials and state legislators are more closely tied to local sentiments than they are to national organizations, Congress, or the Supreme Court. Even though the old power base has shifted to urbanized regions, angry rural or working class constituents can influence legislators, gridlock legislation, or dramatically slow the process of change.
Why Have Communities Lagged?
In contrast to a simplistic view, money and political will are not the only issues central to this debate. Building new programs also involves changing functional roles of institutions as well as attitudes about treatment. The regional facilities have traditionally provided a mechanism for regulating the community density of people with developmental disabilities (Dean, 1976). These institutions also shifted the burden of program costs and community management away from local governments at a time when demographic changes and declining tax bases were limiting local funds for community-based services (Brunnicks et al., 1980). Each of these factors appeared to increase the likelihood of institutional placement for disruptive, unmanageable, or unwanted clients. Attitudinal factors involved a residual sense of fatalism among professionals and families; dwindling extended family and aging, parents; and the belief that affected family members were better off contributed to this phenomenon.
Large state-funded institutions have also provided good paying jobs for rural communities. The steady income from these jobs supplemented farming or seasonal agriculture-related jobs. The institutions also attracted several generations of family members, and kept many nonagricultural wage earners in the community. Nepotism occurred in communities that were losing many of their educated or ambitious young people to out-migration. Although no young people got rich or gained significant social status, the additional cash income may have kept some family farms and communities economically viable and intact.
In addition to educated young people returning as professionals, there was an influx of immigrants (professional staff) into these institutional communities. The large, residential institutions attracted enough professionally trained staff sufficient to allow for the development of social networks. These networks provided not only a critical mass of expertise but also eased the process of assimilation and acculturation to rural communities. Without sufficient density, the professional class would struggle with isolation and the difficulties inherent in acclimating to neighbors. Having a network of friends eased the integration of professional staff with their generally more conservative neighbors, many of whom distrusted overly educated outside experts, government programs, or potential outside agitators. By allowing for a sense of community, these facilities helped to reduce the sense of social and professional isolation that continues to complicate recruitment and retention of professional staff for communitybased health programs (Kessler, 2000; Lamb 2001b).
Within the institution, the political changes of the 60s and 70s began to crack the value system linked to custodialism (Greenblatt, 1976; Herschel, 1992). In an emerging treatment community the daily interactions between professionals and direct care staff were changing and creating an interesting clash of values. The conflicts between the common sense of direct care staff versus the book knowledge of the professional staff was a fertile ground for cultural diffusion and mutual learning (Katz, 1992). Daily contact also provides an avenue for ongoing acculturation of professionals, and a diffusion of professional values to direct care staff. With the slow demise of custodialism, a treatment team was supplanting the autocratic professional. As a result, the tension of an us versus them mentality shifted as personal relationships develop across the educational hierarchy. The outside professional now became a part of the community, or staff. Once acculturated, the professional would be treated quite differently than a newly arrived, know-it-all expert. As the hands-on experience of direct care staff gained status, the professionals could be seen as being more practical and their treatment ideas as using more common sense. This process slowly blurred the hierarchical boundaries and at the same time appeared to enhance a sense of identity with or value of working at the institution.
These ongoing social interactions also influenced the cultural dynamics of the surrounding community. Although there is little written on the subject, the desegregation of state facilities in the 1960 and 70s affected the dynamics of race relations within the institution and surrounding communities. These changes accompanied the shifts in occupational as well as racial stratification. In this sense these large facilities served and continue to function as engines for social change at multiple levels. Because of the individual dynamics of each facility, they can not be viewed as monolithic entities but as small societies with their own institutional culture, social functions and interaction with the surrounding communities.
Cost is frequently cited as the rate-limiting step in the transfer of persons with intellectual disabilities from large state-run institutions to community-based programs. Although high startup costs are a major political concern, we can not underestimate the social and cultural values in these decisions. Over time these institutions have been integrated into the cultural fabric of the host community and surrounding catchment area. Dealing with these institutions as simply a cluster of buildings misses the significance of factors such localism, psychological geography, and attitudes towards social change. Dealing with the institutions as monolithic structures and programs misses the significant differences between facilities and communities (Brunnicks et al., 1980; Reeve et al., 1998). These cultural constructs help define the functional roles of these facilities need to be factored into the process of de-institutionalization.
The conflict between the value-systems of locals and advocates for community placement is similar in many respects to earlier struggles between the forces of social change and traditional ways of thinking and doing things. This paper has drawn a parallel between the movement to de-institutionalize residential facilities for individuals with intellectual disabilities and the Civil Rights struggles of the 1950-60s. Although far less deadly and explosive, the political wrangling over de-institutionalization may reflect the residual effects of this earlier struggle. Gradualism or resistance to change may delay reasonable steps towards de-institutionalization. Ignoring this philosophy and negating cultural factors in the rush to establish community programs is a strategic mistake. It may be more productive to gain a better understanding of social structures, value systems, and the historical functions of these residential facilities. These cultural factors may turn out to be as important as economics in developing a political consensus for change and unless these factors are carefully accounted for, the movement to abolish large state-run regional facilities will be confounded by these complex social forces.
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For further information:
Jarrett Barnhill, M.D.
Developmental Neuropharmacology Clinic
University of North Carolina School of Medicine
Chapel Hill, NC 257599-7160
Editors note: Sarah Kathleen Barnhill graduated from the University of North Carolina earlier this year.