Profound Cognitive Disabilities Research Articles

Growth-Attenuation Therapy for Children with Profound Cognitive and Physical Disabilities

The use of growth attenuation therapy (GAT) is becoming more common in order to enable a family to care for a child with profound cognitive and physical disabilities (PCPD) as they age into adulthood. The first published study on the use of GAT was done with the family of a six-year-old girl with PCPD by Daniel Gunther and Douglas Diekema in Pediatrics in 2006. The ethical application of GAT generated considerable discussion on the use among children with PCPD in the medical and ethics communities. This paper discusses the use of GAT for children with profound cognitive and physical disabilities from a Catholic bioethics perspective.

Respect, cognitive capacity, and profound disability

AbstractAccording to one prominent form of moral individualism, how an individual is to be treated is determined, not by considering her group membership, but by considering her own particular characteristics. On this view, so this paper argues, it is not possible to provide an account of why people with profound cognitive disabilities are owed respect. This conclusion is not new, but it has been challenged by writers who are sympathetic to the recommended emphasis. The paper aims to show that the conclusion cannot be avoided, and to look at what is to be learned from an approach that leads us to this point. It suggests that any account of why profoundly disabled people are owed respect will have to supplement discussion of their particular capacities with a normative account of their humanity.

Inter-rater reliability of the assessment of learning powered mobility use, version 2.0, when applied with children and adults engaged in Driving to Learn in a powered wheelchair.

The Assessment of Learning Powered mobility use (ALP) tool including the ALP instrument and facilitating strategies, was developed for Driving to Learn. This therapeutic intervention aims to provide children and adults who have profound cognitive disabilities with opportunities to learn tool use through powered mobility practise. To allow for longer intervention periods, a partnership was developed between professionals supervising Driving to Learn and persons accompanying children or adults to their practice sessions. Accompanying persons (relatives or assistants) gradually took on shared responsibility for applying the intervention and conducting assessments with the ALP-instrument. The aim of this study was to test the inter-rater reliability of the ALP-instrument version 2.0 as applied in this novel partnership in assessment and intervention. A psychometric analysis compared pair-wise assessments with the ALP-instrument version 2.0, made independently by professional supervisors and accompanying persons following each Driving to Learn session. Weighted kappa statistic was used to compare the matched pair ordinal data. Eight professional supervisors and 22 accompanying persons independently completed assessments with the ALP-instrument after 55 sessions with six children and five adults, who each participated in five Driving to Learn sessions. When the scores from the 55 pairs of assessments were compared, a weighted kappa value of 0.85 was obtained, indicating very good inter-rater reliability between the two rater groups. The resulting inter-rater reliability suggests that it is reliable to implement the ALP-instrument as part of partnership in intervention between supervisors and accompanying persons. Provision of longer periods of Driving to Learn is possible when those who accompany the child or adult are able to gradually assume responsibility for practice and assessment under the supervision of a professional. This partnership approach enables children and adults with multiple and complex disabilities to practise and learn in accordance with their conditions and needs.

Relational suffering and the moral authority of love and care.

Suffering is a ubiquitous yet elusive concept in health care. In a field devoted to the pursuit of objective data, suffering is a phenomenon with deep ties to subjective experience, moral values, and cultural norms. Suffering’s tie to subjective experience makes it challenging to discern and respond to the suffering of others. In particular, the question of whether a child with profound neurocognitive disabilities can suffer has generated a robust discourse, rooted in philosophical conceptualizations of personhood as well as the academic and experiential expertise of practiced health-care professionals. The issue remains unresolved because it is difficult, perhaps impossible, to ever truly know an infant’s lived experience. But what if this is not the best question? What if instead of asking “can this infant suffer?” the discourse is broadened to ask “is there suffering here?” This latter question demands attention to patients’ subjective experiences of suffering, but also to the web of relationships that envelop them. Without losing sight of the importance of patients’ experiences, consideration of their relationships may elucidate the presence of suffering when the patients themselves are unable to provide the same clarity. In this essay, care ethics frames an examination of how suffering manifests in the loving and caring relationships that surround an infant with profound neurocognitive disabilities, changing those relationships and affecting the individuals within them. Exploring suffering through these relationships may offer clarity on the presence and content of suffering for infants with profound cognitive disabilities, in turn offering moral guidance for responding to suffering and supporting flourishing in this context.

Lonely Joy: How Families with Nonverbal Children with Disabilities Communicate, Collaborate, and Resist in a World that Values Words

ABSTRACTDrawing on ethnographic research with four families with children with profound cognitive disabilities who are nonverbal, this article argues that communication and joy among such families are undermined by common perceptions of disability as tragedy and lack of language as absence of communication. Because the Church often perpetuates understandings of disability as tragedy, joy in such families must stand in resistance to not just ableist society, but also to the Church. Therefore, we argue that both such families and the Church remain ‘lonely’ in their joy. Accordingly, we charge the Church to receive and accept a broad variety of communication in order to embrace, come alongside, and magnify the joy of families with persons with disabilities who are nonverbal, enlarging the context of joy in Christian community.

Embracing Asymmetry and Humility in the Face of Disability.

In "The Relational Potential Standard," in this issue of the Hastings Center Report, Aaron Wightman and colleagues propose "relational potential" as an addition to existing standards that are employed in making difficult decisions regarding life-sustaining treatment for children with profound cognitive disabilities. They offer compelling explanations for why the expanded standard is important and why an approach grounded in an ethics of care is both necessary and justified. In what follows, I would like to explore asymmetries that emerge from their account: between clinician and parent and between child and parent. "Asymmetry" is a term invoked in the context of disability, often as a marker of something undesirable, abnormal, pathological. Yet asymmetry may also be generative and worthy of attention, and in some cases, something to be embraced. My aim here is to argue that an important dimension of humility in the face of disability lies in recognizing these asymmetrical relationships and responding to them with care.

Relational Potential versus the Parent-Child Relationship.

In an article in this issue of the Hastings Center Report, Aaron Wightman and his coauthors attempt to address health care providers' moral distress about acceding to parents' requests to provide life-sustaining medical treatment to children who have profound cognitive disabilities. They propose combining John Arras's relational potential standard and care ethics, and they argue that the capacity for caring relationships can provide an independent moral justification for honoring such requests. This combination is, however, unstable. Wightman et al.'s language of potential and capacity opens the possibility of substantial misinterpretation. They rely on epistemological and prognostic uncertainty to argue that reciprocity and participation may be present in the parent-child relationship even when the child's engagement cannot be observed. The terminology suggests that these are characteristics that can be gained or lost rather than characteristics of being born within certain social practices. In contrast, Eva Feder Kittay illuminates family membership as an important social relation. Her articulation of the independent moral value of parenting stands on its own without being conjoined to Arras's position.

The Relational Potential Standard: Rethinking the Ethical Justification for Life-Sustaining Treatment for Children with Profound Cognitive Disabilities.

In this era of rapidly advancing biomedical technologies, it is not unusual for parents of children with profound cognitive disabilities to ask clinicians to provide invasive life-sustaining treatments. Parental requests for such interventions pose a moral dilemma to the treating medical team, as there may be a discrepancy between the team's perception of the child's best interest and the apparent rationale underlying a parent's request. This gap highlights the limitation of the best interest standard in cases where, due to a neurodevelopmental disorder or brain injury, the child's capabilities are severely limited and their interests may be difficult to discern. The harm principle is also inadequate for decision-making in response to these parental requests. To address these limitations, and inspired in part by John Arras's work on the relational potential standard, we propose an integration of care ethics within pediatric decision-making using a new version of this standard. The potential for children to be in caring and loving relationships with their parents, what we will call "relational potential," may provide an ethical justification for clinicians to support parental requests for life-sustaining treatments.

Powered mobility for people with profound cognitive disabilities leads to developing occupational performance

Powered mobility for people with profound cognitive disabilities leads to developing occupational performance

Horrendous-Difference Disabilities, Resurrected Saints, and the Beatific Vision: A Theodicy

Marilyn Adams rightly pointed out that there are many kinds of evil, some of which are horrendous. I claim that one species of horrendous evil is what I call horrendous-difference disabilities. I distinguish two subspecies of horrendous-difference disabilities based in part on the temporal relation between one’s rational moral wishing for a certain human function F and its being thwarted by intrinsic and extrinsic conditions. Next, I offer a theodicy for each subspecies of horrendous-difference disability. Although I appeal to some claims made by Marilyn Adams for this theodicy, I reject one particular claim. I deny that one must be aware that one participates in a horrendous evil when the horrific event occurs. To develop this point and its relevance for a theodicy for horrendous-difference disabilities, I engage with Andrew Chignell’s work on infant suffering. In doing so, I show that what partly motivates the claim is a time-bias, i.e., near-bias. By rejecting this time-bias, I show how it is possible, given post-mortem life, for persons with profound cognitive disabilities to participate in horrendous evils and how these might be defeated by God.

Natality and Disability

Arendt’s “natality,” a promising foundation for humanness that might be expanded to include those with profound cognitive disabilities, emerges in part out of Arendt’s creative interpretation of Augustine. Returning to Augustine provides natality with resources to escape the weaknesses of Arendt’s thought when viewed from the perspective of disability theory: The traps of grounding human dignity in rationality, of downplaying expressions of creativity in non-political spheres, and of denigrating the role of the body.

Inclusive citizenship: refusing the construction of “cognitive foreigners” in neo-liberal times

ABSTRACTIn this article I argue that claims for full inclusion and citizenship for the growing number of people with significant intellectual, cognitive, and psycho-social disabilities are unrealised because of a cognitive ableism embedded in law, policy, and social practice that construes people as “cognitive foreigners”, excluded from belonging on this basis. To explore how to sharpen and better advance full citizenship claims for this group it draws on Hannah Arendt's analysis in The Origins of Totalitarianism of the lethal consequences of denying the “right to have rights” to certain groups made alien. It applies the trajectory she portrays – from rightlessness, to not belonging as a citizen, to having one's right to life itself threatened – as a lens, to examine: contests over disability rights; current struggles over legal recognition of a right to legal capacity and supported decision-making, which it suggests constitutes a basic “right to have rights”; and the legalisation of assisted suicide on the basis of intellectual, cognitive, and psycho-social disability, which comes to “makes sense” in a time of neo-liberal reason and state formation. To disrupt the logic of this trajectory, the article argues for a politics of inclusive citizenship that grows the work of supported decision-making for people with profound intellectual, cognitive, and psycho-social disabilities in actual communities, even as state and other interests contest and deny it legal recognition. Even if the state won't recognise this group's “right to have rights”, proactive communities can.

Driving to Learn in a powered wheelchair: Inter-rater reliability of a tool for assessment of joystick-use

People with profound cognitive disabilities are not expected to learn powered mobility use. The Driving to Learn project focussed on what this population could achieve from practising in a joystick-operated powered wheelchair. By means of using grounded theory methodology an eight-phase process 'growing consciousness of joystick-use' was identified. In addition, a tool for assessment of actual phase of joystick-use and facilitating strategies for each phase emerged. The aim of the present study was to evaluate inter-rater reliability of the assessment tool. The first author (LN) selected 24 video-sequences within the video data collected in the project. Each of the eight phases in the identified process were represented by three video-clips. The video-clips ranged in length between two to five minutes. LN's ratings served as criterion rating against which three independent raters' judgements were compared. The three raters were all occupational therapists, and two were experienced with the Driving to Learn method, powered wheelchair provision and the target population; and one was inexperienced. When comparing the three raters' assessments with that of LN (N = 72), the calculation gave a weighted kappa value of 0.85. All raters judged the tool as having a high degree of usability for assessing phases of joystick-use. Minimal differences were found between the experienced and inexperienced raters. CONCLUSION AND SIGNIFICANCE OF THE STUDY: The inter-rater reliability of the assessment tool was very good. The findings indicate that the tool is reliable and has clinical usability in occupational therapy practice.

Driving to Learn in a Powered Wheelchair: The Process of Learning Joystick Use in People With Profound Cognitive Disabilities

The Driving to Learn project explored ways to help people with profound cognitive disabilities practice operating a joystick-operated powered wheelchair. The project used a grounded theory approach with constant comparative analysis and was carried out over 12 yr. The participants were 45 children and adults with profound cognitive disabilities. Reference groups included 17 typically developing infants and 64 participants with lesser degrees of cognitive disability. The data sources included video recordings, field notes, open interviews, and a rich mixture of literature. The findings that emerged yielded strategies for facilitating achievements, an 8-phase learning process, an assessment tool, and a grounded theory of deplateauing explaining the properties necessary for participants to exceed expected limitations and plateaus. Eight participants with profound cognitive disabilities reached goal-directed driving or higher. Participants were empowered by attaining increased control over tool use, improving their autonomy and quality of life.

Communication Mediated by a Powered Wheelchair: People with Profound Cognitive Disabilities

Keywords guidance, interaction, feeling experiences, self-recognition, concept formation, orientation, intentionality, agency, communicative behavior Abstract The Driving to Learn project explored what people with profound cognitive disabilities could achieve from practice in a joystick-operated powered wheelchair and what facilitated their eventual achievements. Grounded theory methodology was applied for a project involving 45 children and adults with profound cognitive disabilities, 64 with milder degrees of cognitive disabilities, and 17 infants with typical development. The findings included two lines of development: (1) growing consciousness of joystick-use and powered mobility use, and (2) learning communication by driving. An emerging approach for facilitating tool use learning also nurtured the participants' alertness, attention to social exchange, development of sense of self, anticipation, intentionality and a will in mind that was communicated through showing by driving. Significance: Becoming capable of showing communicative intentions, even in a limited sense, changed the attention, interaction and responsiveness of social others. This in turn increased the participants' opportunities for development of more shared meanings and communication.

Making disability public in deliberative democracy

Deliberative democracy harbors a recurrent tension between full inclusion and intelligible speech. People with profound cognitive disabilities often signify this tension. While liberal deliberative theorists sacrifice inclusion for intelligibility, this exclusion is unnecessary. Instead, by analyzing deliberative locations that already include people with disabilities, I offer two ways to revise deliberative norms. First, the physical presence of disabled bodies expands the value of publicity in deliberative democracy, demonstrating that the publicity of bodies provokes new conversations similar to rational speech acts. Second, the inclusion of people with profound disabilities necessitates a form of collaborative speech in which individuals make claims collaboratively. Habermas offers an ideal site to pursue this analysis because he recognizes the theoretical tension between inclusion and intelligibility and because his personal testimony reveals important insight into the lived experience of disability.

Training characteristics important for growing consciousness of joystick-use in people with profound cognitive disabilities

Aim The Driving to Learn project focused on people with profound cognitive disabilities and their possible achievements from practicing joystick-use in a powered wheelchair. The aim of this study within the project was to statistically analyse the participants' outcomes, and to explore factors, in terms of participant and training characteristics, associated with a favourable outcome of training joystick-use. Methods In this study, previously collected and analysed data and findings from 45 participants (aged 12 months to 52 years) were used to extract participant and training characteristics. Associations between participant and training characteristics and the participant's outcome of joystick-use were calculated. Results The results showed that training characteristics were decisive for reaching steering control, whereas participant characteristics were not. Factors significantly associated with participant's reaching ‘control of steering’ were: taking part in more than 30 training sessions (p=0.004), training at two or more training venues (p=0.007), undergoing a training period longer than two years (p=0.016), and a high degree of training with professional trainers (p=0.045). Conclusions Appropriate training characteristics assisted growing consciousness of joystick-use in people with profound cognitive disabilities. Findings from the project also include the identification of an eight-phase process of growing consciousness of joystick-use and the development of a tool for assessment of phases, which were used to measure the participants outcome.

Ashley's Case: The Ethics of Arresting the Growth of Children with Serious Disability

This article analyzes the justifications and ethics of attenuating the growth of children with serious disability. It considers the case of Ashley, a child with profound developmental and cognitive disabilities whose growth was attenuated through high-dose estrogen treatment and surgery. The goals of Ashley's parents and physicians were to keep her small, thereby making it easier for her parents to care for her at home. Perspectives supporting and opposing growth attenuation are presented. It is suggested that community resources and supports, rather than medical strategies, are necessary to address the social challenges of community living.

EQUALITY, FREEDOM, AND/OR JUSTICE FOR ALL: A RESPONSE TO MARTHA NUSSBAUM

Abstract: This essay is a reply to Martha Nussbaum's “Capabilities and Disabilities.” It endorses Nussbaum's critique of the social‐contract tradition and proposes that it might be productively contrasted with Michael Walzer's critique of John Rawls in Spheres of Justice. It notes that Nussbaum's emphasis on surrogacy and guardianship with regard to people with severe and profound cognitive disabilities poses a challenge to disability studies, insofar as the field tends to emphasize the self‐representation of people with disabilities and to concentrate primarily on the aesthetic and political representation of physical disability. The essay concludes with an account of a recent exchange with Peter Singer on the question of our social expectations of people with Down syndrome.

Respecting Children with Disabilities—and Their Parents

In 2004, the parents of six-year-old Ashley, who has profound cognitive disabilities, asked Seattle Children's Hospital to provide three unusual procedures that aimed, not at treating an illness, but at improving the child's and her parents' quality of life. The parents argued that by attenuating Ashley's growth with high-dose estrogen, they would keep her easy to lift and move, and thus readily integrated into their loving family life. By removing Ashley's uterus, they would spare her the distress associated with monthly bleeding that girls with cognitive disabilities can experience especially intensely, as well as remove the possibility of impregnation by a sexual predator. And by removing her breast buds, they would reduce the chances of breast cancer, which runs in the family, and minimize discomfort from the harness needed to lift her in and out of bed. (1) The Ashley case prompted heated debate about acceding to parental requests for medical treatment to cope with non-medical problems. Children like Ashley cannot share in decision-making. The parents have to choose, relying on their understanding of what is best for their child and family. To gain a sense of how various their views can be, it helps to listen to competent children with physical disabilities talk about their experiences. The more I have listened to them, the more I have come to grasp the (in retrospect unsurprising) diversity of views they have about using medical means to achieve social purposes. It has made me ever more committed to the boring but fundamental ideal of truly informed decision-making. Refusing and Requesting Interventions Over the years, many of the people I have spoken with have said things much like what therapist and disability rights activist Harilyn Rousso said when she described growing up with multiple physical disabilities: [My mother] made numerous attempts over the years of my childhood to have me go for physical therapy and to practice walking more normally at home. I vehemently refused all her efforts.... My disability, with my different walk and talk and my involuntary movements, having been with me all of my life, was part of me, part of my identity. With these disability features, I felt complete and whole. My mother's attempt to change my walk, strange as it may seem, felt like an assault on myself, an incomplete acceptance of all of me, an attempt to make me over. (2) (emphasis added) Ms. Rousso argued powerfully that her disabling features were part of her identity. She was not going to change her body to reduce anyone else's discomfort. I am not proud to confess that when I first heard people with disabilities say such things, I practiced some armchair psychoanalysis: Yes, yes, that's very nice. You say that the problem is social responses to your disability, not your disability. But let's be honest; you're in denial. The more I heard people like Ms. Rousso say that the most difficult thing about having a disability was the way temporarily able-bodied people like me treated them, however, the more I began to take them at their word. I became convinced that if, after a process of truly informed decision-making, someone with a disability refuses the use of medical means to improve her social experience, then there is no good alternative to respecting her decision, no matter how surprising I might find it. Frankly, however, showing respect in this way didn't turn out to be a stretch. I love the idea of learning to let healthy bodies be. I'm naturally inclined to prefer changing minds with words to changing bodies with scalpels. Using social means like words requires us to engage each other and reminds us that we are the sort of animals whose minds can change with the giving and taking of reasons. As wonderfully efficient as they can be, medical means can emphasize our growing understanding of ourselves as mechanisms to be fixed. …