Background In many cases, sexual abuse involving a person with an intellectual disability (ID; as a victim and/or as a perpetrator) is not reported to the police. There are very few studies addressing police procedures in these cases, and even fewer addressing procedures at the Public Prosecutor level. The present study had two goals: (i) to describe relevant characteristics of cases of sexual abuse, involving people with ID (as a victim or perpetrator), that were either reported to the police or sent to the Public Prosecutor; (ii) to describe the dynamics of the process from making the report to passing the sentence.Method In this case‐file research, 75 police reports and dossiers at the Public Prosecutor, regarding sexual abuse were followed from the initial report to the police, up to the conviction.Results Even if a case was reported to the police, it did not always go forward to the Public Prosecutor and when a person with ID was involved as the perpetrator, few were actually convicted.Conclusions Whether the perpetrator had an ID did not appear to be a decisive factor in furnishing proof or in the conviction. There seemed to be no evidence for any specific disability‐related influence on the judicial process in cases against perpetrators of sexual abuse. Differentiating police data from court data, however, revealed an important finding. Relatives appeared in court dossiers far more than in police files (34% versus 14%), while on the contrary staff made up 24% in police files and only 13% in court dossiers. This suggested that different sensitivities, protecting staff compared with relatives, may be present in the judicial process, rather than in services.
In vielen Ländern Westeuropas befindet sich die Heimerziehung in einem Wandlungsprozess. Der Artikel gibt einen Überblick über die Veränderungen und die fachlichen Innovationen in den Niederlanden. Im Gegensatz zu fachlichen Absichten und politischen Reformbemühungen steigt die Zahl der in den Niederlanden in Heimen untergebrachten Kinder und Jugendlichen an. Inhaltlich finden neue Ansätze der Intervention, wie Kompetenz- und Verhaltensmodelle, eine breite Anwendung in der Praxis. Daneben erfahren Konzepte der sozialen Gruppenarbeit in den Niederlanden eine Renaissance. Auf organisatorischer Ebene wurden, «Jugendhilfe-Büros» neu geschaffen, bestehende Konzepte wurden in sog. «Module» untergliedert und neue Interventionsprogramme eingeführt. Unabhängig von den fachlichen Innovationen existieren jedoch weiterhin Schwachstellen, wie z. B. Motivationsprobleme der jungen Menschen oder mangelhafte Beteiligungen der Eltern an Entscheidungsprozessen in der Jugendhilfe. Darauf bezogen begründen die Autoren die Notwendigkeit der Erprobung und Untersuchung neuer Formen der Partizipation von Eltern und betroffenen jungen Menschen im Hilfeprozess.
AbstractFamily foster care placement decision‐making has a weak scientific underpinning. The identification of clusters of foster children (groups of foster children with similar characteristics) can help improve decision quality. In this study, we investigated if foster children could indeed be clustered, which problems were identified at the time of placement and what might be the influence of placement history. Two clusters of foster children were found: (i) young children with coinciding parental child‐rearing incapacity and familial problems, and (ii) older children with child problems. At the time of placement, familial problems were more often identified in younger children with a placement history. These findings stress the importance of approaching foster care assessment as part of a dynamic decision‐making process. It is key to finding the most appropriate situation for the child. At the same time, it must be decided how the desired situation can be realized, wherein placement decisions are based on an appraisal of whether or not a foster placement is an appropriate solution. In conjunction with this, it needs to be decided how the parents can be supported towards reunification, or whether or not long‐term foster care is the best option for the child, and if so what conditions need to be met.
Rare diseases affect up to 29 million people in the European Union, and almost 50% of them affect the nervous system or muscles. Delays in diagnosis and treatment onset and insufficient treatment choices are common. Clinical practice guidelines (CPGs) may improve the diagnosis and treatment of patients and optimize care pathways, delivering the best scientific evidence to all clinicians treating these patients. Recommendations are set for developing and reporting high-quality CPGs on rare neurological diseases (RNDs) within the European Academy of Neurology (EAN), through a consensus procedure. A group of 27 experts generated an initial list of items that were evaluated through a two-step Delphi consensus procedure and a face-to-face meeting. The final list of items was reviewed by an external review group of 58 members. The consensus procedure yielded 63 final items. Items are listed according to the domains of the AGREE instruments and concern scope and purpose, stakeholder involvement, rigour of development, and applicability. Additional items consider reporting and ethical issues. Recommendations are supported by practical examples derived from published guidelines and are presented in two tables: (1) items specific to RND CPGs, and general guideline items of special importance for RNDs, or often neglected; (2) items for guideline development within the EAN. This guidance aims to provide solutions to the issues specific to RNDs. This consensus document, produced by many experts in various fields, is considered to serve as a starting point for further harmonization and for increasing the quality of CPGs in the field of RNDs.
Rare diseases affect up to 29 million people in the European Union, and almost 50% of them affect the nervous system or muscles. Delays in diagnosis and treatment onset and insufficient treatment choices are common. Clinical practice guidelines (CPGs) may improve the diagnosis and treatment of patients and optimize care pathways, delivering the best scientific evidence to all clinicians treating these patients. Recommendations are set for developing and reporting high-quality CPGs on rare neurological diseases (RNDs) within the European Academy of Neurology (EAN), through a consensus procedure. A group of 27 experts generated an initial list of items that were evaluated through a two-step Delphi consensus procedure and a face-to-face meeting. The final list of items was reviewed by an external review group of 58 members. The consensus procedure yielded 63 final items. Items are listed according to the domains of the AGREE instruments and concern scope and purpose, stakeholder involvement, rigour of development, and applicability. Additional items consider reporting and ethical issues. Recommendations are supported by practical examples derived from published guidelines and are presented in two tables: (1) items specific to RND CPGs, and general guideline items of special importance for RNDs, or often neglected; (2) items for guideline development within the EAN. This guidance aims to provide solutions to the issues specific to RNDs. This consensus document, produced by many experts in various fields, is considered to serve as a starting point for further harmonization and for increasing the quality of CPGs in the field of RNDs.
Background: The spectrum of disorders of the brain is large, covering hundreds of disorders that are listed in either the mental or neurological disorder chapters of the established international diagnostic classification systems. These disorders have a high prevalence as well as short- and long-term impairments and disabilities. Therefore they are an emotional, financial and social burden to the patients, their families and their social network. In a 2005 landmark study, we estimated for the first time the annual cost of 12 major groups of disorders of the brain in Europe and gave a conservative estimate of €386 billion for the year 2004. This estimate was limited in scope and conservative due to the lack of sufficiently comprehensive epidemiological and/or economic data on several important diagnostic groups. We are now in a position to substantially improve and revise the 2004 estimates. In the present report we cover 19 major groups of disorders, 7 more than previously, of an increased range of age groups and more cost items. We therefore present much improved cost estimates. Our revised estimates also now include the new EU member states, and hence a population of 514 million people. Aims: To estimate the number of persons with defined disorders of the brain in Europe in 2010, the total cost per person related to each disease in terms of direct and indirect costs, and an estimate of the total cost per disorder and country. Methods: The best available estimates of the prevalence and cost per person for 19 groups of disorders of the brain (covering well over 100 specific disorders) were identified via a systematic review of the published literature. Together with the twelve disorders included in 2004, the following range of mental and neurologic groups of disorders is covered: addictive disorders, affective disorders, anxiety disorders, brain tumor, childhood and adolescent disorders (developmental disorders), dementia, eating disorders, epilepsy, mental retardation, migraine, multiple sclerosis, neuromuscular disorders, Parkinson's disease, personality disorders, psychotic disorders, sleep disorders, somatoform disorders, stroke, and traumatic brain injury. Epidemiologic panels were charged to complete the literature review for each disorder in order to estimate the 12-month prevalence, and health economic panels were charged to estimate best cost-estimates. A cost model was developed to combine the epidemiologic and economic data and estimate the total cost of each disorder in each of 30 European countries (EU27 + Iceland, Norway and Switzerland). The cost model was populated with national statistics from Eurostat to adjust all costs to 2010 values, converting all local currencies to Euro, imputing costs for countries where no data were available, and aggregating country estimates to purchasing power parity adjusted estimates for the total cost of disorders of the brain in Europe 2010. Results: The total cost of disorders of the brain was estimated at €798 billion in 2010. Direct costs constitute the majority of costs (37% direct healthcare costs and 23% direct non-medical costs) whereas the remaining 40% were indirect costs associated with patients' production losses. On average, the estimated cost per person with a disorder of the brain in Europe ranged between €285 for headache and €30,000 for neuromuscular disorders. The European per capita cost of disorders of the brain was €1550 on average but varied by country. The cost (in billion €PPP 2010) of the disorders of the brain included in this study was as follows: addiction: €65.7; anxiety disorders: €74.4; brain tumor: €5.2; child/adolescent disorders: €21.3; dementia: €105.2; eating disorders: €0.8; epilepsy: €13.8; headache: €43.5; mental retardation: €43.3; mood disorders: €113.4; multiple sclerosis: €14.6; neuromuscular disorders: €7.7; Parkinson's disease: €13.9; personality disorders: €27.3; psychotic disorders: €93.9; sleep disorders: €35.4; somatoform disorder: €21.2; stroke: €64.1; traumatic brain injury: €33.0. It should be noted that the revised estimate of those disorders included in the previous 2004 report constituted €477 billion, by and large confirming our previous study results after considering the inflation and population increase since 2004. Further, our results were consistent with administrative data on the health care expenditure in Europe, and comparable to previous studies on the cost of specific disorders in Europe. Our estimates were lower than comparable estimates from the US. Discussion: This study was based on the best currently available data in Europe and our model enabled extrapolation to countries where no data could be found. Still, the scarcity of data is an important source of uncertainty in our estimates and may imply over- or underestimations in some disorders and countries. Even though this review included many disorders, diagnoses, age groups and cost items that were omitted in 2004, there are still remaining disorders that could not be included due to limitations in the available data. We therefore consider our estimate of the total cost of the disorders of the brain in Europe to be conservative. In terms of the health economic burden outlined in this report, disorders of the brain likely constitute the number one economic challenge for European health care, now and in the future. Data presented in this report should be considered by all stakeholder groups, including policy makers, industry and patient advocacy groups, to reconsider the current science, research and public health agenda and define a coordinated plan of action of various levels to address the associated challenges. Recommendations: Political action is required in light of the present high cost of disorders of the brain. Funding of brain research must be increased; care for patients with brain disorders as well as teaching at medical schools and other health related educations must be quantitatively and qualitatively improved, including psychological treatments. The current move of the pharmaceutical industry away from brain related indications must be halted and reversed. Continued research into the cost of the many disorders not included in the present study is warranted. It is essential that not only the EU but also the national governments forcefully support these initiatives.
