People with intellectual disabilities only see their disability recognized by hospital staff in one out of five hospital admissions, our new study shows.
Recognizing that a person has a disability is essential to their care. This finding helps explain why many people with developmental disabilities do not receive the hospital care that best meets their needs.
Urgent action is needed to make our hospital system safe, efficient and responsive to the needs of around 450,000 Australians living with an intellectual disability.
A system of neglect
Our to research reviewed historical information for hospitals and disability services in New South Wales between 2005 and 2015 (the most recent data available).
We found 12,593 adults with developmental disabilities who used disability services during this period. In total, these adults visited the hospital 80,960 times from 2005 to 2015. But in only 19,261 of those visits, the hospital acknowledged that the person had a developmental disability.
Intellectual disability is widely defined as a permanent condition that affects intellectual skills, behavior and the ability to perform daily tasks.
Intellectual disability exists across a spectrum. People with mild intellectual disabilities can engage in activities such as full-time work and sports. People with profound intellectual disabilities may not be able to communicate and require full-time care.
Little has changed in the health care system to address this issue since our research data were collected.
In 2008, Australia ratified the UN Convention on the Rights of Persons with Disabilities, which protects the right to the highest attainable standard of health without discrimination on the basis of disability. But the reality for Australians living with an intellectual disability is radically different.
At this moment, the Royal Commission on Violence, Abuse, Neglect and Exploitation of People with Disabilities addresses the issues faced by people with disabilities.
Based primarily on evidence from people with intellectual disabilities on the autism spectrum, the commission found people with cognitive impairment deal with neglect in the health system. They found that people with disabilities face higher costs, longer waiting lists, physically inaccessible services and complex medical forms.
A person with an intellectual disability may experience diagnostic delay and inefficiency due to communication difficulties. Healthcare professionals may not have the skills to assess and manage medical conditions when a developmental disability is also present.
Poor care ends lives earlier
Our previous research has shown gaps in preventive health care, mental health care and in life expectancy. People with intellectual disabilities die on average 26 years younger than the general population.
Most of this difference in life expectancy is not specifically related to intellectual disability itself or its causes. Rather, it is a lifelong health disadvantage, a lack of access, and an inability to manage emerging health issues.
Potentially preventable deaths (due to conditions that could have been avoided with individualized care or treatment, such as viral pneumonia, asthma or diabetes) are more than twice as likely in people with intellectual disabilities.
Although Australia has one of the best health care systems in the worldpeople with intellectual disabilities are neglected there.
In anticipation of the next national elections, people with mental disabilities denounce this “murderous discrimination”.
How to improve recognition?
To improve the recognition of intellectual disability during hospitalization, we would like a national disability health indicator in the form of a code. When noted in their health record, this flag would indicate to the healthcare system that a patient has a developmental disability (with that person’s permission) and may need reasonable adjustments.
This indicator would help make intellectual disability visible in hospitals and ensure that people receive the best care possible.
One such indicator is already used in UK. People with disabilities help set their own indicators to ensure their needs are met.
Reasonable adjustments are things that must be done to make health care accessible to a person with a disability.
For people with developmental disabilities, reasonable adjustments may include adjusting communication, providing extra time and support, and involving the person in choices and decisions. Research shows reasonable adjustments improve care.
In the UK, all hospitals must make reasonable adjustments and the disabled person must be asked about what adjustments they need. Hospitals that do not make reasonable adjustments risk losing their accreditation and funding.
In New South Wales, hospitals are supposed to do reasonable accommodation for people with disabilities. However, our study suggests that most of the time when a person with an intellectual disability goes to hospital, it does not happen because the hospital does not know their needs.