Table 1: Combining mainstream and specialist healthcare for adults with rare causes of intellectual disability [15,19-21].


Optimal availability and accessibility to mainstream health services and health professionals


Requires development and establishments of reasonable adjustments to mainstream to facilitate access to and participation in healthcare by adults with intellectual disability: e.g. more time for consultations, adequate support for communication, adoption of a proactive approach to healthcare, sedation service for imaging, opportunistic testing


No extra financial, physical, organizational or legislative barriers to use mainstream


Participation in mainstream processes involving auditing of quality service, mortality and morbidity reviews, and other healthcare outcomes


Adoption of a proactive approach to healthcare


Aim for continuous improvement in service delivery and health outcomes


Organized access to core specialist group within mainstream


Available for consultation by all health professionals (physicians, general practitioners, surgeons, psychiatrists, allied health professionals) with expertise in rare conditions of intellectual disability and having links with other related networks


Maintains a direct clinical role in care of adults with intellectual disability with their families and disability support networks


Provides information about rare disorders of intellectual disability in adults with appropriate levels of complexity to colleagues as well as adults with intellectual disability, their families and disability support networks. Information includes associated disabilities, medical issues, behavioral and cognitive phenotypes, treatments, and about living with intellectual disability.


Provides clinical advice to colleagues about how to refine their bio psychosocial approach to taking a history, performing examinations, ordering tests, making diagnoses, management plans and review for their adult patients with rare cause of intellectual disability accommodating for impact of intellectual disability on communication and living circumstances and disability supports.


Provide advice on testing for unknown cause of intellectual disability in adults


Participate in review and oversight of quality of ethical aspects of health care


Participate in overseeing framework in place for to ensure that adults with intellectual disability have adequate disability supports organizes to enable them to access and participate in mainstream health services


Responsibility for improved education and competencies among mainstream colleagues on science, clinical aspects, and values in relation to healthcare of adults with intellectual disability within mainstream health settings


Organized and optimal disability supports plan in place to enable access to and participation in mainstream healthcare


Requirement that adult patients with intellectual disability have established and robust disability supports plans in place which are activated when they need healthcare in any setting.


Development of standards, expectations and specific roles of disability and family supports in healthcare settings


Requires implicit understanding that disability supports be included, involved and accept responsibility in specialist core and mainstream healthcare with the individual adult patient with intellectual disability


Establishment of a health-disability interface within mainstream


Involves adults with intellectual disability and their families as well as disability sector professionals to collaborate with specialist core and mainstream health professionals on types of reasonable adjustments, feedback on quality service aspects, service delivery and outcomes


Facilitates cross fertilization of knowledge and values with respect to paradigms, policy, protocol, demarcation of duties, regulatory and legislative issues between disability and specialist and mainstream health sectors and professionals


Clarifies practical responsibilities of health and disability sectors and professionals to adults with intellectual disability patients/clients in GP and specialist visits, public health and inpatient settings


Carries information from collaboration into their own sector to increase knowledge and education about the other