Maggie Buckley, Ph.D., Founder, Transforming Care
This is a reflexive, ethnographic case study of my family as we moved through the process of establishing and providing ongoing support for an individualized, family/person-directed home-based care program for my daughter Carly, who has a dual diagnosis. In using an approach that integrates rather than separates the researcher from the lived experience, my family's personal experiences were documented, illuminating broader cultural issues relative to caregiving. During the small moments of our lives, we encountered the larger social, political, and institutional forces that affect a family giving care. Informed by the theoretical perspectives of care theory and relational psychology, this study is about the complexity of caregiving, and how cultural values and ideologies create an impact on personal caregiving relationships.
Please be advised that the written format of this study has been changed from its original ethnographic design for the purpose of reporting findings for this publication. The interested reader is referred to the original work cited in the references (Buckley, 2007), that contains a much more detailed examination of the issues documented in narrative form, providing what ethnographer Matthews Hamabata (personal communication, May 30, 2005) terms an "experience close" and emotionally evocative analysis of events.
Carly is my second-born daughter. Diagnosed with Down syndrome during infancy, at 25 years old she also struggles with bipolar disorder and features of autistic spectrum disorder. Recent research indicates that individuals who are developmentally disabled may be at a 40% or higher risk for developing a psychiatric disorder than individuals without a developmental disability (Silka & Hauser, 1997). The National Association for the Dually Diagnosed (Mester, 1998) cites a tremendous need to address this issue, which is complicated by the fact that it is frequently difficult to find established services with staff who have competencies to address the complex needs of persons with both intellectual disabilities and mental illness, a combination of disabilities that cross traditional service system boundaries.
Unable to secure effective care in a traditional service setting, we looked to a pilot program for self-directed care in New York, Consolidated Supports and Services, funded through the Medicaid Waiver, to design individualized care for Carly. Our Circle of Support meetings began in June, 2005 and were held once a month prior to the plan approval. The Circle of Support is a mandated component of Consolidated Supports and Services, and part of a growing trend that began with person-centered planning; a collaboration of family, friends, and professionals that come together to design a plan based on the strengths, needs, and preferences of the individual with disabilities. The emphasis on person-centered planning evolved from the current movement to assess quality of life, rather than quality of service (Schalock, Brown, Brown, Cummins, Felce, et al., 2002).
More recently, the concept of person-centered planning has shifted to person-family-interdependent planning. Originating in the field of early childhood, it has been extended to use with adults with disabilities, recognizing that persons with severe disabilities need the support of their families to actualize a self-determined life (Kim & Turnbull, 2004). In September, 2005, we purchased rural property and two alpacas with the intention of creating a home-based program of care for Carly, emphasizing animal care and interactions, activities that are meaningful for Carly.
The Disconnections of Congregate Care: Alone in a Roomful of People
When Carly attended a formal program, she spent a large portion of her day sitting at a table, periodically given a basket containing some small manipulative toys and puzzles in which she had little interest. The scene evoked images of a "day room" from the years of institutionalization. There was too much noise. Carly could not filter out the necessary from unnecessary information that came at her. The combination of overcrowding and understaffing created an atmosphere that made regulating her mood and behavior, something that is difficult for Carly under the best of circumstances, nearly impossible. Her behavior was disturbing, furthering her sense of alienation from peers and staff. Carly's confusion became noncompliance, leading to almost weekly phone calls during the middle of a workday to come and to pick her up.
During times when Carly is better able to regulate her behavior, she endears herself to those around her through her exuberance, infectious laugh, and alternately, her look of concern, accompanied by her familiar question, "are you okay?" I understood that the staff's best intentions were to respond with caring for her, but best intentions do not make up for poor staff ratios and ineffective program design.
Carly received the greatest degree of attention from staff when she was experiencing difficulty regulating her behavior. At times when she was calmer and therefore more likely to benefit from teachable moments, she was left alone. These experiences created a sense of ineffectiveness for Carly. As Judith Jordan (2004) notes, when we have been in relationships where our experiences are not heard or responded to by the other, a sense of isolation and relational ineffectiveness develops.
In speaking with staff, I found that they too felt ineffective. Disempowered by inadequate staffing and an organizational structure that failed to consider the concerns of direct care staff, they privately expressed feelings of futility. An inability to respond effectively often results in the high rate of turnover in this business. Frequent factors involved in staff burnout include emotional exhaustion, depersonalization, and reduced feelings of personal accomplishment (Geysen, 2001). My desire was to not only improve Carly's care, but also to look to ways that will permit caregiving relationships to flourish in more gratifying ways for both care receivers and care givers, infusing meaning and connection in caregiving.
I conducted a case study that relied on naturalistic, ethnographic, narrative casework to facilitate an understanding of our lived experiences as family and paid staff collaborated to create a way to care for Carly. A case study approach was chosen because it has a conceptual organization that is ordered around thematic structures and links ordinary experiences with the academic disciplines. Since self- directed services are a relatively new design in the landscape of services with limited numbers of participants, a case study may be the most effective means of bringing data to the knowledge base. Too, narrative inquiry creates a semblance of reality, revealing the complexities of lived experiences. It is a story that activates subjectivity, compels emotional responses, and provides coherence to distinctive events, drawn from personal and cultural images that allows experiences to be ordered in meaningful ways (Ellis & Bochner, 2000). A common criticism is that narrative produces a romantic version of the self or situation. In response to this, Ellis and Bochner suggest that the question is not about whether the story is an absolutely accurate reflection, but rather what will the narrative do, what consequences will it have, to what use can it be put? Thus, my intention was to contribute to the ongoing dialogue about caregiving, giving voice to the personal and the cultural concerns inherent in giving care.
The primary data for this study were my personal journals. Other data included audiotaped conversations with my family as well as audiotaped informal interviews with Carly's circle members. Observations, conversations, interviews, and events with other caregivers were analyzed and included to lend background and coherence to this narrative. While the greater part of study was conducted over 6 months beginning with the last planning meeting held with our Circle of Support prior to approval of our funding, some of the background information contained and analyzed was obtained from journal notes that I kept regarding Carly's care dating back to 2000.
The information was contained in a notebook system utilizing Richardson's (2000) CAP model, creative analytic practice ethnography, which included the following: observation, methodological, theoretical and personal notes. In using this coding system, I was able to gather a rich source of data that made connections between lived experience, emotion, and theory. The methodological notes were tremendously effective as an organizing tool that helped me manage the process of data collection. I then used the system suggested by Miles and Huberman (1994) to analyze field notes, tapes, documents, personal journals, minutes from Circle meetings, forms relative to Self-Determination, and interview transcriptions.
Interviews were conducted to accomplish what Fletcher (1999) described as contextualizing the data in order to clarify the beliefs, values, and intentions that shaped behavior. These data were transcribed and sorted into categories. During the literature review, I developed a list of possible categories based on the existing theories of cultural ideologies and caregiving. This initial list was altered as new categories become apparent in the data. The initial categories were designed to include relational terms which were evidenced in the interviews. Early in the data collection, issues of trust, which were not part of the initial theorizing about caregiving became prominent during open-ended interviews. In the focused interviews that followed, issues regarding relational competence and boundaries, trust (both interpersonal and formal), and social capital were substantiated as significant themes.
Relational competence is defined by Jordan (2004) as the ability to participate in growth- fostering relationships. It involves mutuality, empathy, being open to influence, relational curiosity, experiencing vulnerability as potentially growth promoting rather than dangerous, and creating good connection rather than exerting power over others. Relational cultural theory served as a useful paradigm as we worked to understand our position relative to mainstream culture and establish the direction for Carly's program. Developed as an expansion of the model of women's growth in connection, it emerged from the recognition that "relationships do not exist as atomized units--separate and distinct from the larger culture," but rather develop or fail to develop in a network of other social and cultural relationships (Jordan & Walker, 2004, p 3).
In our experience, challenges to relational competence seem to occur most often at the intersection of public and private spheres. Blending public and private care offers various opportunities for connection and disconnection. The dichotomy between public and private creates artificial boundaries between reason and emotion. Work is viewed as rational and purposeful. The goal of work is to get things done, to produce something beneficial. Attending to emotions and finding meaning are considered personal, belonging to the private terrain of the family. When caregiving enters the public sphere, worlds collide. The values and behavior that typify relational expressions of care are devalued and discouraged in the public sphere.
Though widespread institutionalization of individuals with disabilities has ended, the interpersonal and social dynamics that evolved from institutional care have been slower to change. Public sphere values reminiscent of institutionalization remain, emphasizing regimentation, documentation, and set standards, to comply with Medicaid Waiver regulations. Disparate values are expressed in confusing, oft times contradictory, expectations and interactions. For example, I needed to recognize when we were emphasizing "duties" over relationship. The effectiveness of paid staff is often judged by task completion. Did the staff person perform in a manner that facilitated the achievement of the care recipients' goals, personal care, and vocational skill development? While important, this became secondary to our desire to see a mutually empowering relationship form between Annie, Carly's personal assistant, and Carly. We wanted their relationship to be about a good connection, rather than a list of accomplished tasks. We talked with Annie and reviewed her daily log, looking for patterns and connections. We interpreted Carly's wishes as well as we could. We talked frequently about the continued development of Carly's relational skills. Working to include people with disabilities in the community requires more than a desire to nurture, it also involves the use of a subset of skills to assess and monitor relational skills and teach behavioral regulation in the community. We have witnessed emotional and cognitive connections resulting in empathy and compassion grow over time through Carly's daily connection with Annie and her animals.
When caregiving is done as work rather than in a private family relationship, boundaries get blurred, resulting in what Karner (1998) refers to as "fictive kinship." Some days Annie seems like family, other days like a good friend, but when I sign Annie's time sheet as her supervisor, I am reminded that she is paid staff. It is the same for Annie.
The restructuring of long term care bears some similarities to the forecast made about reformation in the field of information technology. In his book, Trust, Francis Fukuyama discusses the prediction that large hierarchical organizations will be replaced by networks of small organizations, contending that one critical factor has been overlooked -trust and the ethical norms that inspire it. Fukuyama (1995, p. 26) defines trust communally as "the expectation that arises within a community of regular, honest and cooperative behavior, based on commonly shared norms, on the part of other members of the community." These norms can be about deep value questions or secular norms such as professional standards and codes of behavior. He argues that hierarchical organizations developed because it is difficult to contract out for goods and services with people one does not know well or trust. Organizations provide explicit rules, supervision, and sanctions for those who have not internalized the ethical norms necessary for the development of trustworthy relationships.
The premise of self-directed care is that individuals with disabilities, their families, and paid professionals can create small networks of care; however we cannot afford to overlook Fukuyama's important point--relationships of trust do not arise spontaneously. They derive over time from shared ethical norms and honest cooperative behavior. Individuals with disabilities, particularly those with limited verbal skills, are at risk of abuse in the private domain of the home, and in relationships that are not supervised in traditional ways, unless the caregiver is completely trustworthy.
Recognition of years of documented abuse in institutions has resulted in systems of oversight in agencies serving the developmentally disabled that are stringent and would be impossible to replicate in individualized care. We were often asked by concerned friends and co-workers whether we had installed a "nanny cam" in our home for surveillance. We opted not to do this, wishing to build trust through detailed communication and relationship building. Too, Annie went through an extensive vetting process by our fiscal intermediary, the agency that manages Carly's budget. The establishment of trust is a collaborative process. Caregivers need to trust that families and individuals with disabilities will establish employment practices and guidelines that are fair and equitable. Families need to trust that by creating equitable conditions for caregivers, we will be able to trust the care that is given and eliminate the constant turnover of people in the lives of our loved ones.
Social capital is defined as the resources that reside in human relationships that help promote positive outcomes for individuals (Coleman, 1988). Self-Determination is premised on the belief that committed long-term relationships will not only improve the quality of life for individuals with disabilities but also will ensure their protection. This assumes that a sense of spontaneous community will arise to be a network of support. Our experience is that social capital, while reduced for all of us (Putman, 2000), is in particularly short supply for people with disabilities. Institutionalization sanctioned social distance from people with disabilities. Though people with disabilities returned to the community, they do not have a sense of equal place in the community. Chenoweth and Stehlik (2004) have taken the essential elements of social capital and examined their applicability to individuals with disabilities and their families, finding that people with disabilities and their families have fewer emotional and economic resources to contribute to social capital construction, are more isolated, and therefore have less access to social contacts and, because of this, have a diminished ability to engage in reciprocal relationships and form networks.
We operate this program in relative isolation. Though we purchase services, a drumming class, from a local agency serving individuals with autism and invite individuals from this same agency to visit our animals, we have been less successful gaining opportunities for mainstream community involvement such as volunteering, but are working to establish them. We have encountered rules and regulations at volunteer agencies that preclude Carly's involvement. Too, we needed to consider the severity of Carly's mood variability that makes it difficult to establish a consistent volunteer schedule. Also, Annie frequently reports that while in the community there is a tendency for sales clerks and other service personnel to ignore Carly, addressing their questions and comments to her. Social capital theorists have given insufficient attention to how social capital accrues in the lives of people with disabilities. Likewise, those in the disability field, particularly in cases of dual diagnosis, have given scant attention to the meaning of social capital for successful community inclusion.
Findings suggest that the alliance of paid and unpaid individuals offers the promise of creating small, meaningful communities of care where compassion and relational connections are central. Individualized programs such as Carly's put the model of what is possible out in front for others to see so that we can then look for social policy support to create future models of care for other individuals with disabilities and the elderly. Our experience further suggests that there is an absence of social capital for individuals with disabilities, leading to potential isolation. Attention to building social capital and the relational features of caregiving are critical components in reformulating caregiving practices that enable individuals with disabilities to live fully in the community.
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For further information, please contact Dr. Buckley at firstname.lastname@example.org.