Improving access to community care for people with intellectual disability is needed to avert unnecessary hospitalisations

Responses to the health care needs of this vulnerable group have improved, but further progress is needed

Finding good measures of the effectiveness of health care in the community is challenging, and this problem certainly applies to care for Australians with intellectual disability. The study by Weise and colleagues,1 reported in this issue of the MJA, underscores the extent of health care disadvantage experienced by people with intellectual disability in Australia.

An important prerequisite for a quality indicator is that the cost of measuring it is low compared with the costs of the services involved. Potentially preventable hospitalisations are a group of 22 indications for hospital admissions that it might be possible to avert by providing “timely and adequate” health care in the community.2 Potentially preventable hospitalisation rates are readily computed from routine hospital administrative data. However, given that a complex chain of community events, often hard to specify, precedes any hospitalisation, potentially preventable hospitalisations might be best regarded as a measure of health inequality and access to health care.2

Many routine health care datasets do not identify whether a patient has an intellectual disability, and acquiring information about health outcomes for people with intellectual disabilities is consequently difficult. The National Disability Insurance scheme (NDIS) will not necessarily make this any easier, as providing support for services funded by health systems is not its primary purpose.

The study by Weise and colleagues1 draws on a major record linkage program undertaken in New South Wales, in which records for a large cohort of New South Wales people with intellectual disability and admitted to hospital during 2001–2015 were linked.3 The linked data had been previously used to estimate mortality rates for this group.4 Weise and her co‐authors calculated rates of potentially preventable hospitalisations for NSW people with intellectual disability and compared them with rates derived from routine health data for the entire NSW population; data for 18 of the 22 hospital diagnoses relevant to potentially preventable hospitalisations were available for both groups.

Overall age‐ and sex‐standardised rates of potentially preventable hospitalisations of people with intellectual disability were 3.5 to 4.5 times as high as for the general population. The rates for some acute conditions were five to eight times as high (including dental conditions, one of the major drivers of potentially preventable hospitalisation of people with intellectual disability), and the rate for vaccine‐preventable influenza‐ or pneumonia‐related admissions was almost three times as high for people with intellectual disability.1 Ensuring appropriate coronavirus disease 2019 (COVID‐19) vaccination coverage will be crucial for this group. Most rates of admissions for treatment of chronic diseases were close to population values.

Admissions for treatment of convulsions and epilepsy were more than 22 times as frequent for people with intellectual disability as for the general population.1 While epilepsy is common in people with intellectual disability,5 the unacceptably higher rate of hospitalisation cannot be explained just by its prevalence, nor by problems with compliance with treatment, as differences in hospitalisation rates for other chronic conditions were unexceptional. Does the high rate reflect risk‐averse responses to convulsions in settings where staff lack the clinical background or have other difficulties supporting complex management plans for people less able to communicate their needs? Further research is clearly required. Investigations that apply a root cause analysis approach to tracing pathways that lead to admission of people with convulsions may be useful.6 The NDIS has recently agreed that support staff should receive training in supporting epilepsy management plans;7 it will be important to monitor the impact of this initiative.

At a more general level, people with intellectual disabilities and those who care for them know that it can be difficult to access health care in the community. Many general practitioners, dentists, and other community‐based care providers have only limited experience with the communication skills needed to ensure that such patients are properly cared for. It is heartening to note that, supported by the kinds of information provided by data linkage studies, some progress is being made toward improving responses to the health care needs of this vulnerable group. The federal government has convened a series of national roundtables, and has recently provided funding to four Primary Health Care Networks to establish, in collaboration with the Council for Intellectual Disability, a Primary Care Enhancement Program, and a national roadmap to improved health care in the community for Australians with intellectual disability is being developed.8 Nevertheless, it is likely that there are still many roadblocks to overcome.