A Curriculum for Profoundly Handicapped Students:

There is a developing research base to support the rationale underpinning augmentative and alternative communication (AAC) for people with learning disabilities. However, there is a paucity of research examining the process involved in implementing AAC support for people who have profound disabilities. This paper seeks to explore the processes involved in planning and implementing AAC systems to support the communication of two 6 year olds with profound and multiple learning disabilities. Following assessment, a plan of intervention involving specific implementation of objects of reference, gestures and signs was implemented to enhance communication opportunities for both children. Both children improved their communication skills through use of specific AAC supports. Results suggest that important aspects to include when planning intervention are understanding the level of each child's cognition in relation to their receptive abilities and a consistent, collaborative approach where strategies are agreed between team members. Specific challenges are discussed.

Quality of life and quality of care have become dominant themes in planning and evaluating services for persons with learning disabilities. There are, however, few conceptual models and assessment instruments that are geared to people with profound and multiple learning disabilities. This article presents an ongoing research project aimed at developing and implementing a valid and reliable procedure for evaluating the quality of life of people with profound and multiple learning disabilities in several European countries. This objective will be realised in three subsequent stages, each of which is divided into several steps. The research project presented has the potential to develop theory as well as good practice in the care of people with profound and multiple learning disabilities.

Background and Purpose: The purpose of this study was to use single-subject research methods, combined with social validation procedures, as part of an evaluation/intervention process exploring the effects of adapted switch-operated devices on self-initiated behaviors of a 6-year-old child with profound multiple disabilities.Method: A single-subject withdrawal design with multiple phases, including one alternating treatments phase, was used to investigate the participant's ability to perform selective, voluntary motions as indicators of contingency awareness and preferences. Social validity also was assessed.Results: The child demonstrated the ability to use two switch sites to activate adapted switch-operated devices when a preferred stimulus was contingent on a specific motor action, and she demonstrated the ability to communicate preferences as indicated by more frequent switch activations for one consequence than for a second consequence. Social validity results indicated that both the parents and school personnel generally viewed the evaluation/intervention process as positive.Conclusions: Single-subject research methods, combined with social validation procedures, can be used effectively in the evaluation/intervention process for children with profound multiple disabilities.

We reviewed 18 studies reporting on the use of microswitch technology to enable self-determined responding in children with profound and multiple disabilities. Identified studies that met pre-determined inclusion criteria were summarized in terms of (a) participants, (b) experimental design, (c) microswitches and procedures used, and (d) main results. The 18 studies formed three groups based on whether the microswitch technology was primarily intended to enable the child to (a) access preferred stimuli (7 studies), (b) choose between stimuli (6 studies), or (c) recruit attention/initiate social interaction (5 studies). The results of these studies were consistently positive and support the use of microswitch technology in educational programs for children with profound and multiple disabilities as a means to impact their environment and interact with others. Implications for delivery of augmentative and alternative communication intervention to children with profound and multiple disabilities are discussed.

This study compared the effectiveness of direct/isolated versus indirect/integrated approaches to the provision of occupational and physical therapy services in a school-based program for a learner with profound and multiple handicapping conditions. Within the context of a return-to-baseline design, the learner displayed significantly improved performance on the functional activity of activating an adapted microswitch when therapeutic techniques were specifically referenced to and incorporated in the teaching plan and implementation. Implications for delivering team-oriented services are discussed as well as considerations related to programming for persons with profound handicaps.

Despite the rapid advances in technology relatively few are focused on special education, or the education for people with profound and multiple disabilities. One of the main causes for this to happen is that there is little incentive for companies to design and manufacture technology for a target group of customers without major buying power, or one that makes up a relatively small proportion of the population. Therefore, the most reasonable option is to take the technological tools that are already available, and adapt them to meet the requirements of those with profound and multiple disabilities. This paper presents the design and development of an application for mobile devices that will enable easy and intuitive use of the humanoid robot NAO (manufactured by Aldebaran Robotics) by people with profound and multiple disabilities, as well as by educators in the area of special education. This includes also the adaptation and development of several behaviours and modules for this specific robot.

Accessible summary • We wanted to find out more information about adults with profound and multiple learning disabilities who lived in our area. • We carried out a survey (audit) using information from the local Community Teams. • We found 61 people. Many of these people had two or more disabilities e.g. physical disability, hearing problems, epilepsy, problems with eating and drinking. • We have set up a multidisciplinary team to work with this group of people. • We have made a register to keep information up to date. • We want to highlight the very special needs of this group of people and make sure they are given a good service. Summary An audit was carried out to gain an overview of the profound and multiple learning disabilities (PMLD) population in a local health trust to inform current and future service provision. An overview of the issues faced in developing clear defining criteria is presented. Published definitions of PMLD were used to identify clients from data held on the Special Needs Register (SNR – a data base of people with learning disabilities known to health and social services departments). Information obtained was cross checked with community teams and other professional service records to identify any further individuals who may meet criteria for PMLD. Existing information from individual case notes was then audited to confirm the clients identified meet the criteria for PMLD. The audit identified 61 adults with PMLD; all have complex needs and multiple health care requirements. Eighty-three per cent had two or more disabilities in addition to profound intellectual impairment. Twenty-nine per cent were reported as having problems with dysphagia. People with PMLD should be given priority for health action plans, particularly vision and hearing screening. The audit also needs to be extended to include younger people in transition to adult services. A register of clients with PMLD needs to be established and maintained as part of the SNR register.

Introduction
\nThis article discusses the mode of practice co-constructed by two Dance Movement Psychotherapists for
\nco-facilitating long-term Dance Movement Psychotherapy (DMP) sessions with a closed group of adults in
\na Learning Disability day centre for a London Primary Care Trust. We present our Foundations of Practice
\nwith clients diagnosed with Profound and Multiple Learning Disabilities (PMLD) and an ethos for group-work
\n(Shotter 1994: p39) established over time. We view this as the beginning of our journey in writing about our
\nprofessional relationship with this client group, and we hope that it will stimulate others to contribute to the
\nwriting and development of practice-based-evidence for working with adults with Profound and Multiple
\nLearning Disabilities.
\n
\nComing from a place of curiosity regarding our practice with non-verbal clients, we have reflected on our own
\nperceived learning and physical disabilities. This reflection has been a means for us to recognise the roots of our
\npractice as co-working DMPs with adults with PMLD. In this paper, we bring to light and put some words on
\nwhat may be one of the most non-verbal psychotherapeutic relationships. We acknowledge how our clients may
\nbe perceived in society, and the implication of having a PMLD diagnosis. We name the dichotomy between the
\nsubjectivity and authority inherent to our role as DMPs, and our intention to be curious and open to our clients’
\nunique way of expressing themselves. Recognising these positions and locating our practice within a social
\nconstructionist framework we identify tools and techniques which inform our work. Movement improvisation
\noffers us a means to ground our practice within current dance and psychotherapeutic theory. Considering breath
\nas a vital and natural life giving experience inherent to all beings, we reflect on our roles as DMPs with this
\nclient group, particularly on the therapist’s choices in his/her relationship with adults with PMLD.
\nThe clients considered in this paper are adults diagnosed with Profound and Multiple Learning Disabilities,
\nindividuals who hold multiple complex diagnoses; involving neurological, physiological and physical impairment
\ntogether with mental health diagnosis.

People with profound intellectual and multiple disabilities may not always be well supported to engage meaningfully in activity at home, an injustice impacting on well‐being and quality of life. Research sought better understanding of how occupational therapists work to improve the quality of this support, in particular, how they encourage support workers and managers to adopt recommendations. A single, purposively selected, case of supporting engagement in activity at home was investigated using a critical ethnographic case study methodology from an interpretivist and social constructionist stance. An occupational therapist worked with five people with severe and profound learning disabilities and their support workers over one year. Data were collected using ethnographic methods (participant observation, interviews and document analysis) and analyzed using an emergent systematic strategy (formal coding and categorization, alongside intuitive and affective analysis) and NVivo qualitative data analysis software. The case's story (illustrated by an ethnographic vignette constructed from the data) highlights challenges encouraging others to follow recommendations as intended. It has two overarching themes: the impact of shifting support and leadership cultures; and characteristics of occupational therapy, seeking in particular to create and sustain cultural change by working with support workers in a collaborative and empowering way. To overcome the impacts of organizational culture on how support is given (thereby improving the quality of lives of people with profound intellectual disabilities) professionals need to collaborate with support workers. Occupational injustices they arguably may face, in particular risk of burnout where their roles are conflicting or ambiguous, may also need to be addressed. Implications are suggested for health and social care professionals working indirectly through support workers of people with profound intellectual disabilities (and others with high support needs) and for the education and training of these professionals.

<p>Individuals with profound and multiple disability (PMD) experience more than one type of disability, typically severe to profound intellectual disability and significant motoric impairment. These complex impairments negatively affect many aspects of the person’s functioning, such as daily living, academic, and social skills. Persons with PMD will often experience fluctuating levels of awareness, and often have such severe communication deficits that they rely on the use prelinguistic behaviours (PLBs) to communicate. It is often difficult for those working with these individuals to identify preferences and behavioural states indicative of engagement and motivation. As a result, these individuals often experience social isolation and a lower quality of life. The purpose of this research project was to evaluate the overall level of functioning and communicative abilities of four adolescents with PMD and identify instructional procedures that might enhance their natural method of communication, such that they are more readily understood. This was achieved through assessment and intervention based methods. First, the repertoire of forms and functions of specific PLBs in four participants with PMD were identified. Then, circumstances under which behaviours indicative of alertness and engagement were assessed. Next, the author validated the function of specific PLBs used to request the continuation or access to preferred stimuli. Subsequently, three intervention case studies were implemented to strengthen and/or enhance the PLB requesting behaviours of three participants using microswitch technology and individualised instructional strategies. Results suggested that individuals with PMD can and do demonstrate consistent PLBs used to request access to preferred stimuli. Specific PLBs of three participants were strengthened and/or enhanced, with two of these participants able to use a microswitch to activate a speech generating device to produce a communicative request. Implications of these results are discussed in terms of the overall outcomes for each participant and the challenges of implementing a whole communication assessment and intervention approach for this population of learners.</p>

This article examines education practice for students with intellectual and developmental disabilities in Sweden and the conditions by which it is characterised. It draws on results from the author's doctoral thesis, which analysed participation and interaction in five training school classes (Träningsskola) for students with profound and multiple disabilities, focusing on the organisation of the teaching and modes of student participation in educational practice. It examined the consequences of these modes and patterns of interaction that staff and students create together for participation. Empirical material was collected via classroom observations and 40 hours of video recordings in 5 classes in a training school, in spring 2009 and spring 2010. Study participants were 20 school students, aged 6 to 19 years (11 boys and 9 girls), and 28 members of the teaching teams (special teachers, music teachers, physical education teachers, and 16 assistants). The project design was inspired by an ethnographic approach and constructed as a classroom study. A small portion of the data was transcribed and analysed for use in this article. Detailed transcripts were created from data from video recordings, using conversation analytic notations to gauge the interaction between students and paraprofessionals. The analytic approach was inspired by “conversation analysis”, which provides a method of analysis of modes of participation used when students and staff members interact. Modes of participation that emerged related to varying expectations on students in different educational situations. Demands placed on the students in different activities elicited a range of responses: the attentive and responsive student; the emotionally engaged student; the choice-making, autonomous student; the exploring student; the inattentive student; the student as a recipient of care; and the playful student. There are implicit ideas in educational practice about the conditions under which students in training schools engage in participation, whether these students are aged 6 or 19 years of age. It is argued that more active styles of student participation would be encouraged with communicative, rather than individualistic teaching styles. In turn, this would provide more opportunities to create horizontal relationships with peers or with students without disabilities, or both.

The challenge to define and refine evidence-based practice in the education of students with profound and multiple disabilities has emerged as an important focus of research and discussion over the past decade. In this paper, a model of educational ecologies serving members of this group is introduced as a means of linking individual abilities, human contexts and the wider research and practice agenda in this field. Two particular themes that are addressed are the important contribution of behavior state assessment and recognition of the interdependence of social and communicative factors in educational settings. Implications of this model are evaluated in terms of future priorities in staff development, inclusive practices in curriculum and instructional practices as well as broader quality of life considerations.

This book presents a well informed overview of the strategies for supporting children with severe (SLD), profound (PD) and multiple disabilities (MD). It also gives an array of different examples a...

Finding signs of learning in post-coma persons with profound multiple disabilities (i.e., in a vegetative state or minimally responsive) would underline (a) an awareness/consciousness of their responding and its links with environmental stimuli and (b) a positive development in their immediate situation with the possibility of treatment (rehabilitation) advances. This study was aimed at assessing signs of learning in two of these persons (i.e., two adults). The learning setup involved eye blinking as the persons’ responses and microswitch technology to detect such responses and to present stimuli. The technology consisted of an electronically regulated optic sensor mounted on an eyeglasses’ frame that the persons wore during the sessions and a control system connected to stimulus sources. The study involved an ABABCB sequence, in which A represented baseline periods, B intervention periods with stimuli contingent on the responses, and C a control condition with stimuli presented non-contingently. Data showed that the level of responding during the B phases was significantly higher than the levels observed during the A phases as well as the C phase (i.e., indicating clear signs of learning by both persons). The implications of these data for assessment and rehabilitation of post-coma persons with profound multiple disabilities are discussed.

Many persons with severe and profound disabilities exhibit chronic and excessive drooling, which can have unfavorable effects on their socialization and health. Few treatments to reduce this behavior, however, have been evaluated systematically. In the present investigation, oral motor stimulation was used with 2 children who attended a residential educational facility for students who are blind and who have multiple disabilities. The treatment involved the brushing of the hard palate, the upper and lower gums, the tongue, and the inside of both cheeks at 1-hr intervals during the school day. The efficacy of this approach was demonstrated with a withdrawal experimental design. Because this treatment did not eliminate drooling, vibration was applied to the chin and neck, first in conjunction with the oral motor stimulation and then contingent on the subject's having a dry face. Vibration did not have additional therapeutic effects. The results of this study are discussed in relation to the existing literature on modification of drooling and the difficulty of effecting change in the behavior of persons with severe and profound mental and physical disabilities.