The deaths of 114 people with a disability were notified to the NSW Ombudsman in the period December 2002 – December 2003, and 110 of the deaths were reviewable.

• 58% of the deceased were male and 42% female

• average age at time of death was 52 years, with an age range of 8-93 years

• nearly 46% of those who died had spent more than 21 years in residential care

• 84 of the people who died (76%) were reported as having an intellectual disability and, of these, 55 were reported as also having other disabilities or impairments

Most of the people who died lived in large residential centres (43 deaths), or in group homes (37 deaths). Residents of licensed boarding houses accounted for 22 deaths; six residents of small residential centres and two people in other forms of accommodation died. Irrespective of where people lived, 55% of deaths occurred in hospital.

Common causes of death for 90 people where coronial processes were completed

The Coroner had made a determination of cause of death for 90 of the 110 people who died:

The primary cause of death for the largest group of people (36 deaths, 40%) were diseases of the respiratory system. Respiratory illness is known to be the most common cause of death of people with intellectual disabilities. Given this, we conducted a group review of 33 people who died where the primary or underlying cause of death related to respiratory illness. Key findings of this group review were:

• 24 of the group had a diagnosis of Gastro-oesophageal reflux disease (GORD), which indicates a relatively high recognition of this disease.

• 24 people were reported to have swallowing difficulties. Of these people, less than half (15 people) had been referred to a speech pathologist for assessment of dysphagia within the three years prior to their death, and less than half (15 people) had a Nutrition and Swallowing Checklist completed in the 12 months prior to their death.

• 17 people had a diagnosis of epilepsy. Fourteen of these people died of pneumonia.

• 16 of the group had a diagnosis of asthma or were on asthma medication. Only three of these 16 people had an asthma management plan on their service files.

• 27 of the group did not have a documented oral hygiene routine. There is an association between poor oral hygiene and the development of chronic respiratory disease.

The review indicates a need for improved coordination of health care for people with disabilities. For example, among the group of 110 deaths, The NSW Ombudsman found instances of delays in referral to health specialists and delays in implementing specialist recommendations.

While not all services are required to develop a health care plan, it was of concern that 31 of the 110 people who died did not have a plan that gave a comprehensive overview of their health, and actions to be taken to address identified issues. The value of comprehensively assessed and coordinated health management cannot under-estimated.

The NSW Ombudsman were concerned about the extent of poor record keeping and documentation. Files requested were missing, lost or incomplete; health checklists were incomplete; documents were unsigned or undated. Even critical information, such as a ‘Not for Resuscitation’ request, was poorly recorded. Good documentation of a service user’s needs, regimes and plans are critical to promoting consistent and appropriate care.

Source: "Reviewable Deaths Annual Report 2003-4: An overview" Published December 2004 by NSW Ombudsman. It is available to download as a PDF at http://www.nswombudsman.nsw.gov.au/publications/index.html