There is extensive discussion on the quality of education and support for individuals with profound intellectual and multiple disabilities (PIMD) in relation to inclusion and full citizenship. The discussions are complicated because of differences or lack of clarity in the description of the variations and types of PIMD. A description of the core group is offered, but it is also argued that there cannot be an absolute separation of this specific target group from other adjoining groups. The authors propose a multi‐axial model‐based taxonomy that distinguishes visual and/or auditory impairments, other physical impairments, and mental health problems, in addition to the two key defining characteristics (limited intellect and compromised physical functions). The authors also propose that assessment of people with PIMD be structured toward ascertainment of diagnostic objectives (e.g., confirming or disconfirming the person’s level of intellectual disability) and the determination of a starting point and direction for support of the individual. They conclude that, to prevent misunderstanding in comparison of results of educational programs and interventions, it is recommended that workers describe individuals (or subgroups) with PIMD in publications in detail—using operational definitions. In addition, they propose that an international effort be undertaken to develop and use generally agreed assessment procedures.
Background This study considered the general validity of the basic domains of quality of life that appear in theoretical models, in relation to people with profound multiple disabilities. The authors examined how parents and direct support staff operationalized these basic domains for people with profound multiple disabilities. They investigated the effect of the support setting and age of people with profound multiple disabilities on this operationalization. Methods A number (n ¼ 76) of parents and direct support staff of people with profound multiple disabilities were interviewed. Transcripts were analysed in depth. Results Results showed that the five basic domains as described within the model of Felce Retardation] were identified spontaneously by more than half of the respondents as being salient for the quality of life of people with profound multiple disabilities. When asked explicitly, this value rose to between 88.2 and 100%. The operationalization of these basic domains by parents and direct support staff differed in several aspects from operationalizations for other target groups. Neither age nor support setting turned out to have a significant effect on the operationalization. Conclusions The results supported the multidimensionality of quality of life and the validity of the basic domains for people with profound multiple disabilities. The content of the domains of quality of life differed, however, to a considerable extent for people with profound multiple disabilities. Furthermore, these people are extremely dependent on others for the gratification of their needs and therefore for their quality of life. Ó 2005 BILD Publications Positive affect 82.1 (55) Individuality 62.7 (42) Respect, status and self-esteem 50.7 (34) Atmosphere 41.8 (28)Values are represented as % (n).
It is generally agreed that cognitive and language development are dependent on the emergence of motor skills. As the literature on this issue concerning children with developmental disabilities is scarce, we examined the interrelationships between motor, cognitive, and language development in children with intellectual and developmental disabilities (IDD) and compared them to those in children without IDD. In addition, we investigated whether these relationships differ between children with different levels of cognitive delay. Seventy-seven children with IDD (calendar age between 1;0 and 9;10 years; mean developmental age: 1;8 years) and 130 typically developing children (calendar age between 0;3 and 3;6 years; mean developmental age: 1;10 years) were tested with the Dutch Bayley Scales of Infant and Toddler Development, Third Edition, which assesses development across three domains using five subscales: fine motor development, gross motor development (motor), cognition (cognitive), receptive communication, and expressive communication (language). Results showed that correlations between the motor, cognitive, and language domains were strong, namely .61 to .94 in children with IDD and weak to strong, namely .24 to .56 in children without IDD. Furthermore, the correlations showed a tendency to increase with the severity of IDD. It can be concluded that both fine and gross motor development are more strongly associated with cognition, and consequently language, in children with IDD than in children without IDD. The findings of this study emphasize the importance of early interventions that boost both motor and cognitive development, and suggest that such interventions will also enhance language development.
Results reveal a broad range of barriers and facilitators, but not for people with more severe ID. Further research should also examine these factors among stakeholders responsible for providing support.
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