[Community-based rehabilitation and outpatient care for patients with acquired brain injury and chronic neurological disability in Germany: continuing support for social participation and re-integration in the neurological care system?].

In Germany a number of patients who are suffering from acquired brain injury and chronic neurological disability are either undersupplied or exposed to inappropriate care in their social environment. The number of these patients is increasing due to the changes in the procedures of care and due to demographic factors. While acute medical care and early rehabilitative treatment is accessible throughout the German health care system the necessary multimodal and competent care is rare or absent in the social participative sites such as life and occupational environments of the patients. The complex impairment of the brain, the central organ for sensorial, executive and other cognitive functions of human beings, renders the affected patient an exception in the system of medical and social care - this has only inadequately been considered in the past. The authors explain the necessity to disclose the status of a "human-with acquired-brain damage (Mensch-mit-erworbener-Hirnschädigung, MeH)" explicitly as severely disabled. The paper recommends a number of structural and procedural elements that have proven to overcome the insufficient or inappropriate support in integrating the patients suffering from acquired brain injury and chronic neurological disability in their social environment as well as for a demand-focused support with sustainable rehabilitative and ambulant follow-up procedures. Comparisons with other developed health care systems and international guidelines show that with organizing of early-supported-discharge, community-ambulation, shared-care and community-based-rehabilitation these problems have long since been identified elsewhere. Community-based and resident-oriented concepts have already been systematically implemented. In order to achieve the necessary support for the individual patient, a nation-wide development is necessary in Germany to perform the principles of the German social code and the principles of the Convention on the Rights of Persons with Disabilities of the United Nations: Goals of rehabilitation have to be more than functional treatment. Activation of the patient and supporting their coping and adaptive processes are necessary to achieve social participation and (re)integration into the community and in occupational life as implied by the standards of our society. Important elements of these are (1) identification of the individual patient and his/her burden during acute phase treatment or early rehabilitation (defined red-flag), (2) an individual clinical reasoning and planning of interventions and help, (3) general acceptance of the defined demands by all "players" in medical and social networks, (4) coordination and supervision of the medical and social interventions and of the assistive processes necessary in the individual environment. What seems to be needed is (5) systematic orientation to the goal of individual social participation at all levels of support, (6) cross linking, cooperation and development of the existing medical and social structures on site, (7) expansion of the legal framework and (7a) especially control of the implementation of the existing rights of social benefits and (7b) surveillance (transparency and quality management not only in the area of caregivers but also for the administration of social insurances!). The recommendations of the authors integrate systematically into the phase model of neurorehabilitation (VDR/BAR) in Germany. The focus of this work is the needs-appropriate programming of phase E, i. e., the transition between inpatient and outpatient care, between the clinical facility-oriented and the community-based (domicile-oriented, occupational-oriented) sectors, between welfare and independency.