Specialist training in the medical care for people with intellectual disabilities - the German model Bridge 2010 International Congress of Best Practice in Intellectual Disability Medicine 13 and 14 May 2010 Bristol, UK P. Martin Séguin-Clinic Epilepsy Centre Kork Germany

the German model there is actually no official German model for ID medicine training in Germany!

history a long-winded process to develop a curriculum in ID-medicine (by the German association of physicians for individuals with intellectual disabilities (ID) and multiple handicaps -Bundesarbeitsgemeinschaft Ärzte für Menschen mit geistiger oder mehrfacher Behinderung, BAG) German officials did not pay much attention to ID aspects of medicine for a long time “we do not need any special education in terms of ID medicine”

things have changed during the last years and our officials got aware of the special health needs of persons with learning disabilities in May 2009 the 112th German Medical Assembly unanimously adopted an important resolution on the health needs of persons with intellectual disabilities

Resolution of the 112th German Medical Assembly people of all ages with mental or multiple disabilities live as citizens in our society. Acceptance is of great importance for their participation, and it must be seen and implemented as a reciprocal process, the objective of which is equal participation of people with disabilities in all social spheres this especially applies to the provision of healthcare for persons with mental or multiple disabilities, since they often have a particular demand for health-related services. This demand is based partly on the need to contribute to alleviating or overcoming the disability by medical means, etc., and partly on the diverse forms of co-morbidity existing in cases of mental disability every citizen of this country has a right to needs-based healthcare. This right is a fundamental element of civil and human rights. In addition, people with disabilities must – in accordance with Article 25 of the United Nations Convention on the Rights of Persons with Disabilities, adopted in 2006 – be given the medical care that they additionally need as a result of their disability.

Resolution of the 112th German Medical Assembly the German health system does not yet do justice to the specific and greater need for treatment of people with mental or multiple disabilities there are various reasons for the deficits in the medical care of people with disabilities: –… –the sufficient and necessary provision of healthcare for people with mental and multiple disabilities is not yet guaranteed to an extent covering the demand in this context, people with severe and complex disabilities are much harder hit by these disadvantages than people with slight disabilities, and adults more so than children and young people

Resolution of the 112th German Medical Assembly based on these positions, the 112th German Medical Assembly demanded that: –… –basic training, specialist training and continuing medical education in relation to disability-specific aspects be promoted, in order to professionally prepare the medical community for its tasks, and particularly those physicians who want to devote special attention to people with mental and multiple disabilities

Different ways of training in ID-medicine – thinkable models 1.no special training needed Ø 2.special training for GPs (Australia – some) 3.specialists for patients with ID (Netherlands) 4.Specialization/additional qualification of GPs and specialists (Germany – in the future?)

ID-medicine course theoretical part traineeship the first course started in October 2008 (30 participants) and was finished in October 2009; the second course started in April 2010

Theoretical part first unit (20 hours) - topics –group of persons with ID –the social environment of individuals with learning disabilities (families of children with ID; growing up with a learning disability, transition from adolescence to adulthood; special facilities, etc.) –making the diagnosis of ID (definition of ID; operationalisation of ID – methods of testing and their limits; ICF, etc.) –causes of developmental disabilities (genetics, brain development, peri- and postnatal causes of brain damage; history taking, etc.) –special aspects of how individuals with ID do percept, communicate, and interact –frequently occurring health problems (behavioural disorders, pain assessment, sleep disorders, swallowing disorders, disorders of perception, special preventive medical examinations, etc.)

Theoretical part second unit (15 hours) - topics –frequently occurring diseases neurological (special problems of neurological examination in persons with ID; epilepsies, cerebral palsy, other diseases) psychiatric (classification; special problems in diagnosing psychiatric disorders in persons with learning disabilities; personality disorders,affective disorders, schizophrenia and related states, dementia, autism, etc.; aggressive and self injurious behavior – de-escalation strategies and long-term treatment, etc.) –special syndromes (genetic basics; trisomy 21, fragile-X-syndrome, Rett-, Angelman-, and other syndromes; the neurocutaneous diseases; special preventive aspects) –the health care system in Germany

Theoretical part third unit (15 hours) - topics –frequently occurring diseases internal medicine (congenital heart diseases/defects, pulmonary arterial hypertension, gastro-oesophageal reflux, constipation/megacolon, osteopathia/osteoporosis, etc.) surgery ( from orthopedic surgery to plastic and reconstructive surgery) ENT, ophthalmology, dermatology, obstetrics and gynecology –special helps (rehabilitative medicine; assistive technology – wheelchair prescription etc.) –sexuality and partnership –legal and social aspects –the part of the physician within an interdisciplinary network

traineeship covers five weekdays hast o be completed in a clinic specialized in the treatment of persons with ID or the medical center of a residential home can be partitioned into a maximum of ten parts of four training hours

traineeship course participants should be provided with the opportunity to: 1.examine a patient with serious problem behaviour and with a severe physical handicap 2.witness a team-meeting 3.witness a case conference and the draw up of a treatment plan 4.take part in a crisis intervention 5.get explained different assistive devices (at least four) 6.get explained the prescription of physiotherapy, occupational therapy 7.visit a residential home and a sheltered workshop 8.get access to 10 files of patients with ID or multiple handicaps including 2 case demonstrations 9.present at least one case (preferentially of an own patient)