Coordinated health care and services for older people with intellectual disability in need of extensive efforts by both county council and municipality: implementation, obstacles and opportunities

It is well-known that older persons who have multiple morbidities and extensive needs of health care and services often needs efforts from multiple care providers at both county and municipal levels. This in turn places great demands on coordination. Uncoordinated care and services increases the risks of having to turn to emergency care to solve problems. This can lead to major costs for the society, but also increased risks for the individual since emergency care has major problems when dealing with older persons’ often complex needs.

Modern medical and social progress has increased the average lifespan of persons with intellectual disabilities noticeably and many of them now reaches the normal retirement age and beyond. Older persons with intellectual disabilities often have complex needs of care and services while at the same time they have difficulties making their voices heard. WHO has stated that people with mental retardation or other intellectual disabilities acquired early in life are at the risk of being disadvantaged by not getting the same access to care and services as other people. There are also research which indicates that it is much more common for people with intellectual disabilities to die because of deficiencies in health care and services compared to the general population.

There is a lack of research on people with intellectual disabilities and their need of an integrated care based on coordination between municipalities and county councils. Such research could generate important knowledge – both at a system level and at an individual level – which can be used to plan, develop, coordinate and provide a good and safe health care and social services.

The aim of this project is to investigate how people with intellectual disabilities in practice get access to different kinds of cooperation between care providers in order to achieve a coordinated and integrated care.

The research questions are: 1) How is the law regarding organised coordination between health care and social care regarding people with intellectual disabilities and a extensive need of health care and social care being applied? 2) Which barriers and facilitators regarding coordination can be identified in the cooperation between municipalities and county councils?

The overarching goal with the project is that with the support of the knowledge gained from the project, be able to decrease the need of emergency care since this is a traumatic event which can have major consequences for the quality of live for people with intellectual disabilities with extensive need of health care and social care. The intention is that knowledge gained in the study should help the care staff in their work and it should also be useful for health care and social care providers in order to reflect on how coordination should be designed to suite people with intellectual disabilities and with an extensive need of care and services. The knowledge has a major national interest which is why a report in Swedish will be written and published. The results also have a international interest since discussions on the need of coordination of care and services for people with intellectual disabilities so that they should get good and equal life conditions is something that is ongoing in several parts of the world.

The project is conducted both in the form of phone interviews with a number of leaders at different levels in municipalities, county councils and regional organisations as well as in the form of surveys to LSS-nurses and MAS-nurses in all 290 municipalities in Sweden.