Improper care causes spate of preventable deaths for people with disability

More than half of the deaths reviewed in Queensland were considered potentially treatable or avoidable

Inadequate health care and poor practice from service providers is causing people with disability to die up to 36 years earlier than the general Australian population, a new report says.

UNSW Sydney examined the deaths of 901 people with disability by drawing on published state and territory data from 2007 to 2018.

Across all samples, the median age at death was between 20 to 36 years lower than that of the general population, with the majority of deaths reported considered to be “unexpected”.

In Queensland, over half (53 per cent) of all deaths reviewed were considered potentially treatable or avoidable.

The report was requested by the National Disability Insurance Scheme’s Quality and Safeguards Commission, to obtain an Australia-wide insight into the deaths of people with disability, and identify how best to reduce these risks on a systemic level.

The report identified a number of areas of poor practice that contributed to the spate of premature deaths.

“These included failure to comprehensively support client access to preventative health measures such as recommended vaccinations, annual physical examinations and dental appointments,” the report said.

“Despite observed high rates of lifestyle related risks such as obesity and hypertension, a significant proportion of people whose deaths were in-scope for this review had not been supported to access the services of dietitians or exercise physiologists prior to their deaths.” 

The report authors noted that people with known health risks – such as dysphagia, epilepsy, recurring respiratory infections or cardiac conditions – were not referred in a timely manner for specialist help.

They said it was unclear to what extent health and disability services were supporting people to effectively communicate their health concerns.

Researchers also identified systematic problems around health and disability staff training and expertise across the country.

“For example, even in cases where the person had a mealtime management plan in place, multiple cases of staff not adhering to the plan were noted as a contributing factor in choking deaths,” the report said.

In response to this, the Quality and Safeguards Commission vowed to add an extra requirement in the Practice Standards and Quality Indicators to explicitly address quality and safety in mealtime supports.

Respiratory disease was the major cause of death for people with disability in the data sample, making up 19 per cent of deaths.

The next most common causes of death were nervous system diseases (14 per cent), circulatory diseases (13 per cent) and neoplasms (13 per cent).

The Council for Intellectual Disability said the findings of the research were shocking.

CID senior advocate Jim Simpson told Pro Bono News the report was a stark compilation of evidence on inadequate health care and disability support, which caused people with disability to die far too early.

He said CID has been very concerned about the lack of proper focus on good health care by the NDIS and the safeguards commission.

Simpson added that practice standards were the bedrock requirements that disability providers needed to meet.

“It is not adequate that the commission is only planning new standards in relation to mealtime supports for people with swallowing problems,” Simpson said.

“For example, standards should also oblige service providers to support people with intellectual disability to have annual comprehensive health assessments.

“These assessments are covered by Medicare and have strong research backing for leading to better health promotion and identification of hidden health problems.”

Shocking new report on deaths in disability services.

NDIS Commission responds.

Very timely with @DRC_AU health hearing next weekhttps://t.co/NQND1Ooqha@DANALtd1 @PWDAustralia @3DN_UNSW @QCIDD @WWDA_AU @CatiaMalaquias @juliepianto @NDISDeane @BronwynHemsley @chrishattoncedr pic.twitter.com/OSI3UmJDxI

— CID (@CIDvoice) February 11, 2020

Simpson said the Council of Australian Governments (COAG) needed to resolve a national system of review of deaths of people with disability.

He also said NDIS funding must be reformed to give people with complex health needs access to a health facilitator, to deliver appropriate health supports within NDIS services.

The report made several recommendations for the Quality and Safeguards Commission.

This includes regular reporting of deaths to aid tracking of changes in mortality data over time, collecting better data on the causes of death, and regularly screening people for respiratory-related health issues.

The report also said disability and health care staff needed extra education and training to prevent choking deaths and improve epilepsy management.

The full report can be seen here.