Profound Physical Disabilities Research Articles

A Personalized Contactless Emergency Aid System Designed for Individuals With Profound Physical Disabilities

A Personalized Contactless Emergency Aid System Designed for Individuals With Profound Physical Disabilities

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.

Interlocutors and Interactions: Examining the Interactions Between Students With Complex Communication Needs, Teachers, and Eye-Gaze Technology

This study analyzes the role of the machine as a communicative partner for children with complex communication needs as they use eye-tracking technology to communicate. We ask: to what extent do eye-tracking devices serve as functional communications systems for children with complex communication needs? We followed 12 children with profound physical disabilities in a special education classroom over 3 months. An eye-tracking system was used to collect data from software that assisted the children in facial recognition, task identification, and vocabulary building. Results show that eye gaze served as a functional communication system for the majority of the children. We found voice affect to be a strong determinant of communicative success between students and both of their communicative partners: the teachers (humans) and the technologies (machines).

Changing Places, Changing Lives

The built environment has long been recognised as a significant determinant of social inclusion and participation of people who experience disability. Despite existence of anti-discrimination legislation and development of the United Nations Convention on the Rights of Persons with a Disability, many individuals continue to experience inequitable access to their communities. Using a qualitative approach, this study aimed to explore the lived experiences of people who use Changing Places facilities within Victoria, Australia. Semi-structured interviews were conducted with four participants regarding their experiences of using Changing Places facilities. Findings from this study further consolidate existing research that highlight social inequities experienced by people with severe and profound physical disabilities. Findings in this preliminary study can also support the development and expansion of Changing Places facilities, not only as a means of meeting legal obligations within our community, but also as an approach towards improving social inclusion and participation of people with severe and profound physical disabilities.

Changing Places, Changing Lives

The built environment has long been recognised as a significant determinant of social inclusion and participation of people who experience disability. Despite existence of anti-discrimination legislation and development of the United Nations Convention on the Rights of Persons with a Disability, many individuals continue to experience inequitable access to their communities. Using a qualitative approach, this study aimed to explore the lived experiences of people who use Changing Places facilities within Victoria, Australia. Semi-structured interviews were conducted with four participants regarding their experiences of using Changing Places facilities. Findings from this study further consolidate existing research that highlight social inequities experienced by people with severe and profound physical disabilities. Findings in this preliminary study can also support the development and expansion of Changing Places facilities, not only as a means of meeting legal obligations within our community, but also as an approach towards improving social inclusion and participation of people with severe and profound physical disabilities.

Making the Invisible Visible: Inviting Persons with Disabilities into the Life of the Church

Christianity espouses the dignity of all humanity and professes welcome for all to the communion of saints. Yet people with disabilities, especially those with more severe or profound physical or psychological disabilities, are largely invisible inside our houses of worship. This article examines the meaning of dignity and inclusion through the lenses of Christian anthropology, disabilities liberation theology, and the lived experience of persons with disabilities. It concludes with some suggestions on how to begin inclusion.

Adding Real-Time Bayesian Ranks to Error-Related Potential Scores Improves Error Detection and Auto-Correction in a P300 Speller.

Brain-computer interface (BCI) spellers could improve access to communication for people with profound physical disabilities; however, improved speed and accuracy of these spellers is required to make them practical for everyday use. Here we introduce the combination of P300-speller confidence with the error-related potential (ErrP) to improve online single-trial error detection and correction accuracies in a BCI speller. First, we present a mechanism for obtaining P300-confidence using a real-time Bayesian dynamic stopping framework that makes novel use of additional stimuli that occur due to epoch and filter delays. Second, we propose an ensemble of decision trees to combine ErrP and P300-confidence features. Third, we describe the unique attentional differences between error and correct feedback in our spelling interface and discuss how these differences affect ErrP physiology. We tested online error detection on 11 typically developed adults using a BCI system trained on a previous day and found an average sensitivity of 86.67% and specificity of 96.59%. Automatic correction increased selection accuracy by 13.67% and utility grew by a factor of 4.48. We found, however, that the improved performance was primarily attributable to the inclusion of P300 confidence in error detection, calling into question the significance of single-trial ErrP detection.

Single-Trial Analysis of Inter-Beat Interval Perturbations Accompanying Single-Switch Scanning: Case Series of Three Children With Severe Spastic Quadriplegic Cerebral Palsy.

Single-switch access in conjunction with scanning remains a fundamental solution in restoring communication for many children with profound physical disabilities. However, untimely switch inaction and unintentional switch activations can lead to user frustration and impede functional communication. A previous preliminary study, in the context of a case series with three single-switch users, reported that correct, accidental and missed switch activations could elicit cardiac deceleration and increased phasic skin conductance on average, while deliberate switch non-use was associated with autonomic nonresponse. The present study investigated the possibility of using blood volume pulse recordings from the same three pediatric single-switch users to track the aforementioned switch events on a single-trial basis. Peaks of the line length time series derived from the empirical mode decomposition of the inter-beat interval time series matched, on average, a high percentage (above 80%) of single-switch events, while unmatched peaks coincided moderately (below 37%) with idle time during scanning. These results encourage further study of autonomic measures as complementary information channels to enhance single-switch access.

Motor neuron disease: the impact of decreased speech intelligibility on marital communication

Background: The onset of motor neuron disease (MND), a neurodegenerative disease, results in physical and communication disabilities that impinge on an individual’s ability to remain functionally independent. Multiple aspects of the marital relationship are affected by the continuously changing roles and responsibilities. Communication is one of the most constructive ways of dealing with emotions that are elicited by these changes. Method: This study explored the association between the deteriorating speech of persons with MND and couples’ perception of marital communication. Fourteen couples participated in this non-experimental correlational research study. Data were collected over a 12-month period through the administration of objective and subjective measures. Results: Results showed that despite decreased speech intelligibility, the relationship between the deteriorating speech and the couples’ perception of marital communication was not statistically significant. Conclusion: Overall, the results proved that the supposition that communication between couples will invariably deteriorate as a result of progressively reduced speech intelligibility is not necessarily valid. The fundamental importance of effective communication in marriage is highlighted. It is well established that augmentative and alternative communication strategies can preserve the ability to develop and maintain intimate rewarding relationships, even in the face of profound physical disabilities.

Cognitive and physical rehabilitation of intensive care unit survivors

Millions of patients who survive medical and surgical general intensive care unit care every year experience newly acquired long-term cognitive impairment and profound physical and functional disabilities. To overcome the current reality in which patients receive inadequate rehabilitation, we devised a multifaceted, in-home, telerehabilitation program implemented using social workers and psychology technicians with the goal of improving cognitive and functional outcomes.This was a single-site, feasibility, pilot, randomized trial of 21 general medical/surgical intensive care unit survivors (8 controls and 13 intervention patients) with either cognitive or functional impairment at hospital discharge. After discharge, study controls received usual care (sporadic rehabilitation), whereas intervention patients received a combination of in-home cognitive, physical, and functional rehabilitation over a 3-month period via a social worker or master's level psychology technician utilizing telemedicine to allow specialized multidisciplinary treatment. Interventions over 12 wks included six in-person visits for cognitive rehabilitation and six televisits for physical/functional rehabilitation. Outcomes were measured at the completion of the rehabilitation program (i.e., at 3 months), with cognitive functioning as the primary outcome. Analyses were conducted using linear regression to examine differences in 3-month outcomes between treatment groups while adjusting for baseline scores.Patients tolerated the program with only one adverse event reported. At baseline both groups were well-matched. At 3-month follow-up, intervention group patients demonstrated significantly improved cognitive executive functioning on the widely used and well-normed Tower test (for planning and strategic thinking) vs. controls (median [interquartile range], 13.0 [11.5-14.0] vs. 7.5 [4.0-8.5]; adjusted p < .01). Intervention group patients also reported better performance (i.e., lower score) on one of the most frequently used measures of functional status (Functional Activities Questionnaire at 3 months vs. controls, 1.0 [0.0 -3.0] vs. 8.0 [6.0-11.8], adjusted p = .04).A multicomponent rehabilitation program for intensive care unit survivors combining cognitive, physical, and functional training appears feasible and possibly effective in improving cognitive performance and functional outcomes in just 3 months. Future investigations with a larger sample size should be conducted to build on this pilot feasibility program and to confirm these results, as well as to elucidate the elements of rehabilitation contributing most to improved outcomes.

A children's hospice funded team to develop transitional pathways between acorns and adult providers

MotivationAcorns has previously identified through a feasibility study that there is little proactive coordination in respect of planned transition to adult services for our clients. There are circa 110 young...

A Musical Improvisation Interface for People With Severe Physical Disabilities

In response to the challenge of including students with minimal controlled voluntary movement in a drum class with their peers, a software interface was created to enable participation in group musical improvisation. It was developed at Abilities First Inc., a school for children with disabilities in Poughkeepsie, New York, some of whom have profound physical disabilities. This collaborative research project employs a participatory action research approach, emphasizing the inclusion of students using the interface, their parents, and teachers as researchers in the ongoing development and use of the interface. A disability studies framework is used to investigate the extent to which improvising with the interface serves as an opportunity for artistic expression for the participants, and as a form of resistance to the socially constructed idea that people with disabilities are somehow inadequate. The interface—Adaptive Use Musical Instruments (AUMI)—was also used in patients with acquired brain and spinal cord injuries at Teleton Rehabilitation Institute in Santiago, Chile.

A Musical Improvisation Interface for People With Severe Physical Disabilities

In response to the challenge of including students with minimal controlled voluntary movement in a drum class with their peers, a software interface was created to enable participation in group musical improvisation. It was developed at Abilities First Inc., a school for children with disabilities in Poughkeepsie, New York, some of whom have profound physical disabilities. This collaborative research project employs a participatory action research approach, emphasizing the inclusion of students using the interface, their parents, and teachers as researchers in the ongoing development and use of the interface. A disability studies framework is used to investigate the extent to which improvising with the interface serves as an opportunity for artistic expression for the participants, and as a form of resistance to the socially constructed idea that people with disabilities are somehow inadequate. The interface—Adaptive Use Musical Instruments (AUMI)—was also used in patients with acquired brain and spinal cord injuries at Teleton Rehabilitation Institute in Santiago, Chile.

Special Education Teachers' Perception on Career and Vocational Education of Students with Profound Physical Disabilities

Special Education Teachers' Perception on Career and Vocational Education of Students with Profound Physical Disabilities

Parents' Perception on Career Education of Students with Profound Physical Disabilities

Parents' Perception on Career Education of Students with Profound Physical Disabilities

The Human Eye Position Control System in a Rehabilitation Setting

Our work at Ireland’s National Rehabilitation Hospital involves designing communication systems for people suffering from profound physical disabilities. One such system uses the electro-oculogram, which is an (x,y) system of voltages picked up by pairs of electrodes placed, respectively, above and below and on either side of the eyes. The eyeball has a dc polarisation between cornea and back, arising from the photoreceptor rods and cones in the retina. As the eye rotates, the varying voltages projected onto the electrodes drive a cursor over a mimic keyboard on a computer screen. Symbols are selected with a switching action derived, for example, from a blink. Experience in using this mode of communication has given us limited facilities to study the eye position control system. We present here a resulting new feedback model for rotation in either the vertical or the horizontal plane, which involves the eyeball controlled by an agonist-antagonist muscle pair, modelled by a single equivalent bidirectional muscle with torque falling off linearly with angular velocity. We have incorporated muscle spindles and have tuned them by pole assignment associated with an optimum stability criterion.

A Communication Course for Adults with Profound Intellectual Disability and Physical Disabilities

From September to December 1989 Ipswich TAFE (an adult education facility near Brisbane, Queensland) hosted a Communication Course for five adults who each have a profound intellectual disability and physical disability (in the UK this is the equivalent of profound and multiple learning difficulties). None of the five students possess skills of intentional communication. The course is believed to be the first one of its kind in Australia and was of an experimental nature. The course content is described. The main aim of this presentation is to share information and to invite collaboration from others in similar areas of work.

Is It Appropriate to Attenuate Growth in Profoundly Developmentally Disabled Children to Facilitate Their Care?

Bioethics| January 01 2007 Is It Appropriate to Attenuate Growth in Profoundly Developmentally Disabled Children to Facilitate Their Care? AAP Grand Rounds (2007) 17 (1): 2–3. https://doi.org/10.1542/gr.17-1-2 Views Icon Views Article contents Figures & tables Video Audio Supplementary Data Peer Review Share Icon Share Twitter LinkedIn Tools Icon Tools Get Permissions Cite Icon Cite Search Site Citation Is It Appropriate to Attenuate Growth in Profoundly Developmentally Disabled Children to Facilitate Their Care?. AAP Grand Rounds January 2007; 17 (1): 2–3. https://doi.org/10.1542/gr.17-1-2 Download citation file: Ris (Zotero) Reference Manager EasyBib Bookends Mendeley Papers EndNote RefWorks BibTex toolbar search toolbar search search input Search input auto suggest filter your search All PublicationsAll JournalsAAP Grand RoundsPediatricsHospital PediatricsPediatrics In ReviewNeoReviewsAAP NewsAll AAP Sites Search Advanced Search Topics: attenuation, disabled children Source: Gunther DF, Diekema DS. Attenuating growth in children with profound developmental disability: a new approach to an old dilemma. Arch Ped Adol Med. 2006;160:1013–1017; doi:10.1001/archpedi.160.10.1013 One of the stated goals in Healthy People 2010 is to reduce the number of children with disabilities who are in congregate care facilities. As children with severe disabilities grow, the increasing difficulty of providing care may interfere with keeping them at home. The authors from the University of Washington, Seattle discuss the case of a non-ambulatory 6-year-old female with profound developmental delay. The child’s parents, pediatric specialists, and ethics consultants agreed on a plan to use hysterectomy followed by high-dose transdermal estrogen to attenuate the child’s growth. In considering such a novel therapy we must consider the risks and benefits to the child. The primary benefit of growth attenuation therapy is that it makes caring for the child less difficult, and the authors argue that direct benefit accrues to the child when care is easier to achieve in the home. The ethical principle of nonmaleficence requires that we also consider the possible harms of therapy. The authors believe the possible harms are primarily related to the medical risks, such as thrombosis, and that those risks are not “out of line” with other therapies used in this population of children. Growth attenuation in a non-ambulatory child with severe developmental delay may be beneficial to both parent and child. The history of past abusive use of sterilization shouldn’t prevent consideration of a possibly beneficial therapy. Each case should be carefully considered, but if informed parents request this type of therapy it should be an option for non-ambulatory children with profound developmental delay. Dr. Ross has disclosed no financial relationship relevant to this commentary. This commentary does not contain a discussion of a commercial product/device. This commentary does not contain a discussion of an unapproved/investigative use of a commercial product/device. Gunther and Diekema present a case of a child with profound cognitive and physical disabilities whose parents requested treatment to arrest her growth to facilitate caregiving at home. The authors discuss the benefits and risks, and argue that with proper medical, psychosocial, and ethical screening and informed consent, growth-attenuation therapy should be available upon request. They do not recommend this treatment as standard of care, but argue that it may be an appropriate option for parents who are motivated to provide home care for these children. Brosco and Feudtner disagree. In an accompanying editorial, they argue that there is no empirical evidence to show that the treatment will result in shorter and lighter children who could be cared for at home.1 They fear the potential for misuse of such treatment in light of the eugenics history of the last century. Although the concerns of Brosco and Feudtner are valid, they fail to give adequate respect to the particular families who make these requests. These are families committed to doing what is best for their children. They are willing to undergo... You do not currently have access to this content.

Using goal attainment scaling to evaluate a needs-led exercise programme for people with severe and profound intellectual disabilities

The aim of this study was to evaluate whether involvement in a 16 week exercise programme improved goal attainment in areas of behaviour, access to community-based experiences, health and physical competence. Participants were women with severe intellectual disability and associated challenging behaviour (setting A,N = 14) and male/female service users with profound physical and intellectual disabilities (setting B,N = 8). The exercise programme included active and passive exercise, walking, swimming, hydrotherapy, team games and rebound therapy. Significant gains in aggregated goal attainment were demonstrated by week 16. The reliability and validity of our goal attainment procedures were demonstrated with inter-rater reliabilities exceeding 80 percent. Changes in goal attainment were concurrent with global clinical impression scores in a series of single case studies. Continuing care settings should dedicate care staff to provide routinized, continuing exercise programmes.

The zero-reject policy in special education

This article analyzes the zero-reject policy at the core of American special education law from the standpoint of morality, by examining the policy in terms of the following three moral theories: utilitarianism, Rawlsian Kantianism (justice as fairness) and neo-Aristotelianism, as developed recently by Martha Nussbaum in her capabilities account of social justice.Although on first impression, none of these theories seems to provide a framework within which to develop a plausible defense of the zero-reject policy, on deeper analysis there are plausible arguments in support of the policy from the perspectives of all three theories. The analysis supporting this conclusion leads to an enhanced appreciation of the conceptual resources that major philosophical theories of morality provide to understand the moral bases of the most important educational rights, under American special education law, of children with severe to profound physical and cognitive disabilities.