Health system letting down those with intellectual disability

THE Australian healthcare system – particularly primary and community care – is “not sufficiently equipped to meet the complex health care needs of people with intellectual disability”, according to experts.

Research published in the MJA has highlighted several potential problem areas in the primary care of people with intellectual disability, which may account for their much higher rates of preventable hospitalisations compared with the general population.

The study from UNSW Sydney compared age-standardised rates of preventable hospitalisations between two NSW population datasets – one covering 51 452 people with intellectual disability and one on the overall NSW population between 2001 and 2015.

People with intellectual disability were found to be 4.5 times more likely to have a preventable admission to hospital compared with the general population. Rates were particularly high for acute conditions – up to eight times higher than the general population. This included a 22-fold higher rate of preventable hospitalisations for convulsions/epilepsy and a 5.6-fold higher rate for dental conditions. The rate of preventable hospitalisations for vaccine-preventable conditions, such as influenza and pneumonia, was also about three times as high in the intellectual disability cohort compared with the general population.

The authors wrote that their findings showed “the Australian health care system, particularly primary and community health care, is not sufficiently equipped to meet the complex health care needs of people with intellectual disability”.

They described Australia’s primary health care system as being “driven by administrative rather than medical and preventive health factors” when it comes to dealing with people with intellectual disabilities.

Dr Janelle Weise, lead author of the MJA study, from the Department of Developmental Disability Neuropsychiatry at UNSW Sydney, told InSight+ there was a dearth of research about the best models of care for people with intellectual disability.

“Historically, people with intellectual disability primarily resided in institutions, and so when the institutions closed and people started living in the community, a divide remained between the disability and the health care sectors,” she said.

“The assumption was that the mainstream health care services would be able to meet the needs of people with intellectual disability.

“While this is certainly the ideal, it’s unlikely to happen without additional support and adaptation for people with intellectual disability.”

Dr Weise hopes to conduct a multipronged study involving linked datasets and patient interviews to evaluate the points at which primary health care often breaks down for patients with intellectual disability, leading to a preventable hospital admission.

“The answers are likely to be complex, but without a doubt, both GPs and hospital staff need to become more confident in talking with people with intellectual disabilities, and discharge summaries need to be a lot clearer,” Dr Weise said.

“The hospitals can’t just assume that a patient with an intellectual disability is going to be able to access their GP in the same way as a person without an intellectual disability does.”

Dr Weise said the study’s findings that vaccine-preventable hospitalisations were more common among people with intellectual disability were concerning in light of the COVID-19 vaccine rollout.

“We do really hope there’s an effort toward engaging people with intellectual disability to get vaccinated for COVID-19,” she said.

Weise and colleagues also cited previous research suggesting GPs often lacked confidence in providing health care for people with intellectual disability, while patients with intellectual disability had poor uptake and engagement with preventive health care.

Jack Kelly, a project worker with the NSW Council for Intellectual Disability (CID) said in his experience as a person with cerebral palsy, the best doctors were often those who had been disability support workers while at university.

“A lot of GPs will say, ‘I worked as a support worker when I was a medical student’. They understand the system and the paperwork, and they have confidence working with patients with disability,” he said.

“It’s really important for doctors to take time to get to know the patient with intellectual disability, to see how they tick.”

Mr Kelly said good support workers were critical to reducing preventable hospitalisations among people with disabilities.

“Sometimes the support worker will call an ambulance because they don’t know their client well enough to understand their vital signs, or because there’s been a poor handover between support workers,” he said. “These sorts of problems are clearly preventable.”

Jim Simpson, a senior advocate with CID, noted previous research by many of the same authors of the latest MJA study found that 38% of deaths of people with intellectual disability were potentially avoidable, compared with 17% in the general population..

“This latest study on hospital admissions is yet more valuable evidence of the stark health inequalities facing people with intellectual disability,” Mr Simpson told InSight+.

Mr Simpson urged GPs to make use of Medicare-funded annual health assessments to improve preventive health among people with intellectual disability.

Health practitioners who want to improve their confidence in working with patients with intellectual disability can access online learning on the 3DN website.

People with disability are not identified in the National Preventive Health Strategy, which Dr Weise said was a major oversight.

The Department of Health is currently in the final stages of developing a National Roadmap for Improving the Health of People with Intellectual Disability.