Journal 09/15

1. Creating a shared data collection tool for persons with intellectual disabilities - Exploratory Study

Intellectual disability affects approximately 2-3% of the population. It is defined as a significant limitation in intellectual functioning of 2 standard deviations below the average IQ, an adaptive behavior of 2 standard deviations below the mean in at least two of three dimensions: conceptual, social, or practicing skills, all these symptoms occurring before the age of 18 years old. No register of people with intellectual disabilities is available in France. Field professionals have expressed the need to create a shared data collection tool to identify an unknown population and facilitate collaborative research to improve caring for such people. Such a project raises three questions:

1. What is the relevance of a specific measurement tool to intellectual disabilities?
2. Is a professional consensus around a respectful metrological approach of a singular life trajectory possible?
3. What indicators are needed? The present exploratory study aims to assess the relevance of a collection of data shared by interviewing 12 clinical professionals who work daily with children and adults suffering from intellectual disabilities. Understanding their needs must be considered.

3. Pedagogy, education and activities at Lebenshilfe

Needs, may differ from person to person. It is needless to say that every single individual carries certain needs, which grow with the growing age. Having needs is natural and meeting certain needs is essential for a healthy life promotion. People often get confused in differentiating essential needs from demanding desires. Desires are self-oriented and needs are situation-oriented as far as mentally retarded are concerned. To my experience, most of the desires can be satisfied with financial strength and maximum needs could be met with a sense of understanding over the situation. Meeting some pressing desires leads to personal satisfaction and attending certain essential needs lead to quality life promotion. Needs of people with mental retardation are considered as special needs. They require proper recognition and appropriate attention. Lack of proper medical care and negligence in attending special needs create physical, psychological, social, spiritual abilities deterioration. If they are neglected and felt not required, they damage the functional abilities affecting the healthy life thus leading to functional declension.

5. Vestibular stimulation and alertness in individuals with profound intellectual and multiple disabilities

Background: Individuals with profound intellectual and multiple disabilities (PIMD) experience a large number of difficulties when engaging in activities. Because vestibular stimulation has been described as a precondition for other types of stimulation, the present study focuses on this type of stimulation.

Method: Video observations were conducted for 21 participants during one-on-one interactions with a direct support person (DSP) in three different situations: 1) vestibular stimulation, 2) visual/auditory stimulation, and 3) visual/auditory stimulation following vestibular stimulation with alertness as the dependent variable. Each situation was videotaped once for each participant.

Results: The descriptive statistics revealed several differences in alertness reactions between the conditions. Still, these differences were not statistically significant. In addition, large differences between subgroups based on gender, age groups, visual impairment, and epilepsy have been found.

Conclusions: DSPs can be advised to adapt the stimulation situation to the individual needs and preferences before presenting vestibular stimulation to individuals with PIMD in clinical practice.