Embedded evaluation of preferences sampled from person-centered plans for people with profound multiple disabilities

We investigated a brief, embedded assessment for evaluating preferences sampled from person-centered plans. After developing person-centered plans for individuals with multiple disabilities, systematic assessments were conducted with preferences sampled from the plans. An assessment of sampled preferences was then embedded within the participants' daily routines. The two assessments identified similar preferences based on participant approach responses. Both assessments also indicated inconsistencies with reported preferences in the person-centered plans. Overall, results suggested the embedded assessment may be an alternative means of evaluating some preferences reported through person-centered planning.     

A systematic evaluation of preferences identified through person-centered planning for people with profound multiple disabilities

Person-centered planning is becoming a popular means of designing supports for people with disabilities. However, very little research evaluating person-centered planning exists. We evaluated the degree to which items and activities reported to be preferred in person-centered plans represented accurate preferences based on how individuals responded when presented with the items and activities. Person-centered planning meetings were conducted with 4 individuals with profound multiple disabilities to develop preference maps and to identify leisure-related preferences. A sample of the reported preferences in the plans was then systematically assessed by observing each participant's approach and avoidance responses to the items and activities. Of the sampled items and activities reported to be preferred in the plans, 42% represented moderate preferences based on the latter assessment process and 33% represented strong preferences. With 2 participants, several preferences identified in the plans were nonpreferred items and activities based on the preference assessments, and some were frequently avoided. These results suggested that although person-centered plans may identify some accurate preferences for people with profound multiple disabilities, this approach should be used cautiously. Results also suggested that such plans should be supplemented with systematic preference assessments to ensure the accuracy of identified preferences. Future research areas focus on evaluating other aspects of person-centered planning.     

Reducing indices of unhappiness among individuals with profound multiple disabilities during therapeutic exercise routines.

A program was developed to reduce indices of unhappiness that accompanied therapeutic exercise routines among people with profound multiple disabilities. Indices of unhappiness were recorded, using an observation system that had been validated through previous research involving happiness-related variables, while support personnel conducted exercises with 3 participants. A multicomponent program was then implemented that involved presenting highly preferred stimuli before, during, and after each exercise session. Results indicated that the program was accompanied by reduced indices of unhappiness for each participant relative to the traditional method of conducting the exercises, although changes in the preferred stimuli used with 1 participant were required before consistent reductions occurred. Results are discussed regarding the importance of reducing unhappiness indices as a means of enhancing aspects of the daily quality of life for people with profound multiple disabilities. Areas for future research are also discussed, focusing on expanding the unhappiness-reduction procedures to other routine events that may occasion indices of unhappiness.     

Computer‐assisted learning for adults with profound multiple disabilities

Five adults with profound physical and intellectual disabilities were taught to respond to photographs of preferences embedded in Microsoft PowerPoint (Microsoft, 1997 ) presentations by operating microswitches that functioned as mouse clicks. Rate of responding was generally correlated with changes in types of presentation, although variability in rate was often high, and session durations were quite short. Two participants showed substantial increases in responding when fitted with switches that were easier to manipulate. This exploratory study demonstrates that people with extremely limited physical and cognitive abilities can be taught to operate switches that produce changes in visual arrays on a computer screen and sometimes differentially so. Implications for responding to photographic representations of preferences, rather than the tangible preferences themselves, are discussed. Copyright © 2004 John Wiley & Sons, Ltd.     

Adapting a grid into a microswitch to suit simple hand movements of a child with profound multiple disabilities

We adapted a grid into a microswitch for the hand movements of a girl with profound multiple disabilities who lay on her back. The grid, suspended above the girl's face, was equipped with two mercury devices, i.e., small sealed ampoules containing a mercury drop and ending with conductive leads. A lateral or forward movement of the grid would make the mercury drop of at least one device slide to the conductive leads and activate the device. During the intervention, activations of the devices, i.e., microswitch activations, produced the occurrence of favorite stimuli. Analysis showed that the girl increased the frequency of hand movements and microswitch activations during the intervention phases compared to the baseline phases (when the favorite stimuli were not available). The increase was retained at a 1-mo. postintervention check.     

Increasing the happiness of individuals with profound multiple disabilities: replication and extension

A multielement design was used to compare the effects of three treatments on the happiness of 3 individuals with profound multiple disabilities. The conditions were typical programming using materials selected by staff, presentation of preferred materials plus social interaction, and social interaction alone with no materials present. Both the presentation of the preferred items with social interaction and social interaction alone resulted in higher happiness indicators than typical programming. The combination of preferred items and social interactions was somewhat superior to social interaction alone.     

Empowering people with physical disabilities through advocacy skills training

Members of an advocacy organization for people with physical disabilities were trained to identify and report issues at group meetings. In addition, two consecutive chairpersons were trained to conduct action-oriented meetings. Measures of group members' activities outside meetings and related outcomes on identified issues were also collected. Results indicated increases in the number of disability-related issues reported by trained members and consistent improvements in chairperson performance following training. Retrospective interviews and permanent records showed that advocacy activities, as well as the outcomes of members' actions, increased after training. These findings and their implications for the empowerment of people with disabilities are discussed.     

An enriched teaching program for reducing resistance and indices of unhappiness among individuals with profound multiple disabilities

We evaluated an enriched teaching program for reducing resistance and indices of unhappiness displayed by 3 individuals with profound multiple disabilities during teaching sessions. The program involved presentation of preferred activities before, during, and after each teaching session, discontinuation of identified nonpreferred activities, and a brief break and preferred activity following occurrence of resistance. Implementation of the enriched teaching program was accompanied by reductions in resistance and indices of unhappiness for each participant. Results also indicated no negative impact of the program on participant performance of the teaching steps or staff teaching proficiency. Staff questionnaire responses provided a degree of social validation for the observed changes in that staff reported the participants liked the enriched teaching program more than the traditional teaching process. Directions for future research discussed include identifying critical aspects of the overall program and the potential relation between teaching proficiency and the program's enrichment effectiveness.     

Assessing a microswitch-based stimulation procedure for eye-blinking responses in a young woman with profound multiple disabilities

We applied a new microswitch-based stimulation procedure for eye-blinking responses with a young woman with profound multiple disabilities, and compared effects of this procedure on the eye-blinking responses and smiling with the effects of a caregiver-based stimulation condition. Analysis showed that the microswitch-based stimulation procedure, with stimulation occurring contingent on eye-blinking responses, increased the frequencies of these responses significantly above the levels recorded in baseline and caregiver-based stimulation conditions. No changes in smiling frequencies occurred. Implications of the findings in terms of alertness, learning, and quality of life are discussed.     

Assisted ambulation and activity for restless or passive persons with profound multiple disabilities: assessing performance and preferences

Two adults with profound multiple disabilities and restlessness or passivity were exposed to two occupational conditions involving (a) robot‐assisted ambulation and activity in a fairly large area and (b) unassisted ambulation and activity in a small area. The aim was to examine the participants' performance (independent activities, ambulation, and challenging behavior) in the two conditions and their possible preferences between those conditions. Data showed that the participants had higher percentages of independent activities, higher percentages of ambulation, and somewhat lower percentages of challenging behavior in the condition with the robot. The participants also seemed to prefer this condition over the one without the robot. Implications of the findings were discussed. Copyright © 2000 John Wiley & Sons, Ltd.     

Facilitating ambulation and activity in persons with profound multiple disabilities through a visual orientation system

A visual orientation system was employed to help two adults with profound multiple disabilities ambulate to programmed activity destinations and carry out familiar activities. The system consisted of a portable control device and light sources. The person participating in experiment 1 was to operate the control device for activating the programmed destinations (and turning on light sources showing the way to them). The person participating in experiment 2 did not need to operate the control device; this activated each programmed destination automatically. A new destination was activated after a preset time had elapsed from the person reaching the previous destination. Results indicated that both persons used the visual orientation system successfully and thus could reach the destinations and carry out activities on their own. General implications of the findings are discussed. © 1998 John Wiley & Sons, Ltd.     

A job-seeking self-efficacy scale for people with physical disabilities: preliminary development and psychometric testing

People with disabilities are at an increased risk of unemployment. The role of interventions aiming to enhance the employment prospects of people with disabilities is receiving increased attention. However, evaluation is hampered by the paucity of measures specific to the needs of the target population. The purpose of the present study was to develop and conduct preliminary testing of the psychometric properties of a job-seeking self-efficacy (JSS) scale that reflected the experiences of people with physical disabilities. Job-seeking self-efficacy was defined as perceived ability to perform the skills involved in seeking employment that are salient to people with disabilities. Scale development and testing involved four studies and resulted in the 12-item JSS scale and six-item managing disability at interview (MDI) component, both of which were unidimensional and had high internal consistency. In addition, there was evidence of construct and concurrent validity. Greater jobseeking self-efficacy and perceived ability to manage disability at interview were associated with more positive psychological well-being. Only the MDI component was associated with physical functioning: lower perceived ability to manage disability at interview was associated with greater impairment of physical functioning. The pattern of associations supported the rationale for a separate component reflecting the need to resolve practical issues linked to access and availability of facilities before participation in the interview procedure per se .     

Poverty and people with intellectual disabilities

Epidemiological studies have consistently reported a significant association between poverty and the prevalence of intellectual disabilities. The available evidence suggests that this association reflects two distinct processes. First, poverty causes intellectual disabilities, an effect mediated through the association between poverty and exposure to a range of environmental and psychosocial hazards. Second, families supporting a child with intellectual disabilities and adults with intellectual disabilities are at increased risk of experiencing poverty due to the financial and social impact of caring and the exclusion of people with intellectual disabilities from the workforce. It is likely that the association between poverty and intellectual disabilities accounts in part for the health and social inequalities experienced by people with intellectual disabilities and their families. Implications for policy and practice are discussed in relation to the funding of services for people with intellectual disabilities and preventative approaches to addressing the health and social inequalities experienced by people with intellectual disabilities and their families.     

Promoting fluency of performance of self‐help tasks with a person with multiple disabilities

A combination of favorite songs and verbal prompts (automatically delivered through portable technology) was used to promote fluency of performance of self‐help tasks in a young man with multiple disabilities. Data indicated that the intervention was effective in reducing the time required by the man to complete the self‐help tasks (dressing and washing). A momentary withdrawal of the prompts after about 6 months from the beginning of the study was accompanied by performance deterioration. Implications of the findings are discussed. Copyright © 2002 John Wiley & Sons, Ltd.     

Meaning in life for individuals with physical disabilities

What makes your life meaningful?" is a question previous researchers explored with people of various ages, but not of individuals who have significant physical impairments. In this study, 26 individuals with physical disabilities were asked to describe what makes their lives meaningful. Analysis showed human relationships were the most frequently reported source of meaning in life, the sources being family members, friends, and people in the community. The second most frequently cited meaning was service, specifically, helping and educating others, such as other people with physical disabilities.     

The effects of the Positive Environment Program (PEP) on the behaviors of adults with profound cognitive and physical disabilities

This study evaluated the effects of the Positive Environment Program (PEP) on the behaviors of residents and staff in a state‐operated residential facility during a 2½ year period. The participants included 19 adult residents with profound cognitive and physical disabilities and 11 staff members who worked with them. Data were collected on alertness, leisure material availability, engagement, staff interactions, and resident affect during two samples of data collection six months prior to implementation of PEP. Training was then provided to staff on positive interaction skills. Following the training, researchers implemented a monitoring program and a staff incentive program. The results of this project showed improvements in staff interactions, resident interaction with leisure materials, improved levels of alertness, and increases in a ‘happiness index’. The benefits and limitations of this project as well as future research are discussed. Copyright © 2002 John Wiley & Sons, Ltd.     

The lived experiences of people diagnosed with multiple sclerosis in relation to exercise

The purpose of this study was to examine the lived experiences of people diagnosed with Multiple Sclerosis (MS). Seven active exercisers with MS participated in semi-structured interviews regarding their exercise experiences since diagnosis. Data were analysed using Interpretative Phenomenological Analysis (IPA; Smith?&?Osborn, 2003 Smith, JA and Osborn, M. 2003. “Interpretive phenomenological analysis”. In Qualitative psychology: A practical guide to research methods, Edited by: Smith, JA. 51–80. London: Sage.  [Google Scholar]). Interpretive Phenomenological Analysis. The results and interpretations of narratives revealed a number of functional limitations due to the severity of MS symptoms, which were found to have a major effect on the ability of the participants to exercise. Furthermore, psychological problems and the heightened behavioural adjustments to the progressive disability led to re-appraisal of ability to exercise. Previous, relevant exercise experience made participants more determined to continue to be able to exercise after diagnosis. The wider exercise experience narratives were related to concerns about safety, dependability on others to overcome the challenges, and potential environmental hazards. The loss of spontaneous opportunities to exercise because of these actual and perceived barriers was key to this population. This research highlighted the need to rethink the health and social service arrangements in relation to exercise provision for individuals with MS.     

A microswitch program to foster simple foot and leg movements in adult wheelchair users with multiple disabilities

This study assessed a microswitch program to foster simple foot and leg movements in 2 adult wheelchair users with multiple disabilities. The participants' mood (indices of happiness) was recorded throughout the study. Data showed that participants rapidly increased the target foot and leg movements and maintained those movements during the course of the study, which lasted about 4.5 months. With regard to indices of happiness, 1 participant showed a fairly modest increase during the intervention while the other participant showed a substantial increase. Implications of the findings are discussed.