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Education and Training in Developmental Disabilities, 2008, 43(3), 334–341 © <strong>Division</strong> on Developmental Disabilities Therapeutic Interventions in <strong>the</strong> Ne<strong>the</strong>rlands and Belgium in Support of People with Profound Intellectual and Multiple Disabilities Carla Vlaskamp and Han Nakken University of Groningen Abstract: For several reasons, people with profound and multiple disabilities may be offered a variety of <strong>the</strong>rapeutic interventions. Thus far, researchers have shown a limited interest in providing an empirical base for <strong>the</strong>se interventions. Research is needed on <strong>the</strong> <strong>the</strong>oretical rationale (if any), <strong>the</strong> supposed ‘modus operandi’ and <strong>the</strong> claimed benefits of <strong>the</strong>rapeutic interventions. As a first step, this paper offers an overview of <strong>the</strong> use of <strong>the</strong>se interventions. A total of 48 settings in <strong>the</strong> Ne<strong>the</strong>rlands and Belgium were included in this study. Results show that some interventions are very frequently used, with Snoezelen, Sensory Integrative Therapy, Equine Therapy, Basic Stimulation and Aroma<strong>the</strong>rapy being <strong>the</strong> most common. Only one of <strong>the</strong>se five has been subjected to a number of carefully designed studies. Nearly a third of all <strong>the</strong>rapeutic interventions currently in use are not clinically evaluated. Of those that are evaluated, more than half are only evaluated monthly or even less frequently. The article ends with a call for an effective research strategy to separate interventions that are beneficial to people with PIMD from those that are unsubstantiated. In <strong>the</strong> support of people with profound intellectual and multiple disabilities (PIMD), practitioners in centers for special education, day services centers and residential facilities use a series of <strong>the</strong>rapeutic interventions that aim to achieve a broad spectrum of claimed effects, ranging from ‘feeling good’ and ‘restoring a natural balance’ to developmental effects and regaining functions. These interventions or procedures are generally not carried out by medical staff but by direct support staff members or <strong>the</strong>rapists (such as physio<strong>the</strong>rapists or speech <strong>the</strong>rapists). In practice-oriented journals, popular magazines and on television and <strong>the</strong> internet, a large range of <strong>the</strong>se interventions or <strong>the</strong>rapies are documented. They may claim ‘to cure’, such as Gentle Teaching, for example, which promises to cure self-injurious behavior by using unconditional acceptance and a gentle touch. They may promise impor- The authors would like to thank prof. dr J.H. Hogg for his comments on a previous version of <strong>the</strong> manuscript. Correspondence concerning this article should be addressed to Carla Vlaskamp, Department of Health Care Psychology, University of Groningen, Grote Rozenstraat 38, 9712 TJ Groningen, The NETHERLANDS. Email: c.vlaskamp@rug.nl 334 / Education and Training in Developmental Disabilities-September 2008 tant sounding but vague benefits, such as Therapeutic Touch, which states that <strong>the</strong>re is ‘a natural human potential which can be actualized through <strong>the</strong> intent to help or enhance <strong>the</strong> recipients’ own ability to support <strong>the</strong>mselves towards wholeness,’ or ‘Dolphin <strong>the</strong>rapy’ which states that ‘swimming with dolphins makes children with special needs learn up to four times faster and more intensively.’ These kinds of interventions are used throughout <strong>the</strong> human services area, and while no area or enterprise has been immune to <strong>the</strong> phenomenon of unsubstantiated <strong>the</strong>rapeutic interventions, <strong>the</strong> field of profound and multiple disabilities appears to be particularly vulnerable. This may be due to several reasons. Firstly, <strong>the</strong>re is <strong>the</strong> size and complexity of <strong>the</strong> disabilities of those with PIMD. In addition to <strong>the</strong>ir profound intellectual and severe or profound motor disabilities, individuals with PIMD also have a high prevalence of sensory disability (Nakken & Vlaskamp, 2006; Schrojenstein, Lantman-de Valk et al., 1997; Van Splunder, Stilma, Bernsen, Arentz, & Evenhuis, 2003). Fur<strong>the</strong>rmore, as well as <strong>the</strong>se impairments, people with PIMD have an overall risk of developing medical complications and almost all require regularly administered
medication, for example anticonvulsant drugs, sleep medication, medication to prevent reflux and sedatives (Hogg, 1992; Kapell et al., 1998; Zijlstra & Vlaskamp, 2005). This category of people thus forms a physically very vulnerable group with a heavy or total dependence on personal assistance for everyday tasks. This puts a strain on all those who provide support. Secondly, those with PIMD obtain services from several kinds of professionals with different vocational backgrounds, using various <strong>the</strong>oretical frameworks and ideas. Within all of <strong>the</strong> different professions it is possible to find <strong>the</strong>rapeutic interventions that may seem to be ‘worth a try’. We lack a tradition of <strong>the</strong>rapeutic interventions that are specifically designed and developed for people with PIMD. Most <strong>the</strong>rapeutic interventions that are offered to this category of people are originally designed and developed for those with less severe disabilities, and have in some cases been ‘modified’ by practitioners to fit this specific category. Thirdly, <strong>the</strong> size and <strong>the</strong> complexity of disabilities will provoke feelings of insecurity relating to <strong>the</strong> educational and support goals that are operative. These feelings of insecurity may render parents and professionals powerless, and leave <strong>the</strong>m with a strong urge to explore whatever possibilities are placed before <strong>the</strong>m. The evidence base supporting <strong>the</strong>se types of <strong>the</strong>rapeutic intervention is limited as far as <strong>the</strong>ir use for people with PIMD is concerned. However, even if <strong>the</strong> effectiveness of <strong>the</strong>se interventions is unproven, this does not automatically mean that <strong>the</strong>y are inherently good or bad. None<strong>the</strong>less, <strong>the</strong>re are forms of <strong>the</strong>rapeutic intervention or <strong>the</strong>rapies which may be likely to cause harm, ei<strong>the</strong>r directly, for example a child subjected to passive training activities for hours a day, or indirectly, for example if applying <strong>the</strong> procedure keeps <strong>the</strong> person with PIMD from effective treatment or from more pleasurable activities. Such <strong>the</strong>rapies could also raise <strong>the</strong> hopes of parents by continually promising an improvement in <strong>the</strong> child’s condition, a promise that may not be fulfilled. Many of <strong>the</strong>se <strong>the</strong>rapeutic interventions are adopted by well-meaning professionals or parents who do not have <strong>the</strong> background, <strong>the</strong> skills, or <strong>the</strong> inclination to investigate <strong>the</strong>se treatments (Jacobson, Foxx, & Mulick, 2005). Researchers have shown limited interest in delivering such a supporting base of evidence. This might be because studying <strong>the</strong> effectiveness of <strong>the</strong>se <strong>the</strong>rapeutic interventions for individuals with PIMD is time-consuming and methodologically complicated. Thus far, only a limited amount of scientific literature documenting both <strong>the</strong> inefficacy and efficacy of some of <strong>the</strong> <strong>the</strong>rapeutic interventions for people with PIMD is available (for example, Lindsay, Black, Broxholme, Pitcaithly, & Hornsby, 2001; Mount & Cavet, 1995; Vlaskamp, de Geeter, Huijsmans, & Smit, 2003; Hogg, Cavet, Lambe, & Smeddle, 2001; Smith, Mruzek, & Mozingo, 2005; Kaplan, Clopton, Kaplan, Messbauer, & McPherson, 2006; van der Putten, Vlaskamp, Reynders, & Nakken, 2005a, 2005b). Research is needed on <strong>the</strong> <strong>the</strong>oretical rationale (if any), <strong>the</strong> supposed ‘modus operandi’ and <strong>the</strong> claimed benefits of <strong>the</strong>se <strong>the</strong>rapeutic interventions. As a first step, we need an overview of <strong>the</strong> interventions actually in use at present. Method Participants and Setting Ten Dutch organizations and nine organizations in <strong>the</strong> Flemish-speaking part of Belgium participated in this study. The facilities were randomly chosen and evenly spread throughout <strong>the</strong> Ne<strong>the</strong>rlands and Flanders. Each facility offers support to people with PIMD in multiple settings, such as residential care, day services and educational centers. Except for four special educational centers who only provide support for children with PIMD, all facilities offer services to a diverse population of those with intellectual disabilities. A total of 48 settings were included in this study: 23 residential care units, 13 day services, 11 special educational centers and one respite care home. The 23 residential care units provided for 1007 people with PIMD, <strong>the</strong> 13 day services settings provided for 342 people. The special educational centers provided information on <strong>the</strong>ir population of 162 children with PIMD, and <strong>the</strong> respite care home on six children with PIMD. Therapeutic Interventions / 335
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