Submission No 116
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM
DISORDER
Organisation: Health Services Commissioner
Date Received: 22 April 2016
Submission S116 Received 22/04/2016 Family and Community Development Committee
The increasing number of complaints received by the OHSC could suggest that more consumers with ASD and their families are able to access health services and/or are able to make health service complaints.
The OHSC has identified two types of complaints involving consumers with ASD: (1) those relating to assessment, diagnosis and treatment of ASD; and (2) those relating to consumers’ access to other health services. The OHSC, unfortunately, does not have the ability to conduct statistical analysis of complaints relating to consumers with ASD as against the rest of the population. While the OHSC provides a qualitative analysis of complaints in this submission, it is not clear to us whether the complaint patterns and themes identified below are more likely to occur to consumers with ASD. We are unable to say, for example, whether consumers with ASD are more susceptible to misdiagnosis of other medical conditions or are more vulnerable to the use of restrictive interventions. In spite of the limitations of our complaints data, it suggests that some consumers with ASD and their families and carers are experiencing difficulties in accessing quality health care.
Assessment and diagnosis of ASD
We have received a number of complaints relating to the assessment, diagnosis and treatment of a family member’s ASD, often from a parent or carer.
Complainants have informed us about incorrect diagnosis or non-diagnosis, resulting in their inability to access early intervention programs. Several complaints raised concerns about the basis for the diagnosis of ASD, including inconsistent medical opinions or incorrect assumptions made by practitioners.
A number of complainants raised issues about inaccessible treatment programs due to long wait lists and lack of information about programs.
Accessing other health services
The OHSC has also received complaints about the treatment of consumers with ASD while seeking health services for other medical conditions.
Some complainants have raised concerns about service providers’ failure to incorporate communication and treatment strategies when dealing with consumers with ASD. A number of parents and family members have complained about the lack of dignity and respect in the provision of health services. They also raised concerns about health service providers’ failure to take into consideration their children or loved ones’ ASD, despite information being given to providers. Parents reported their distress in seeing their child held down by four adults while forced to take medication. In another case, a grandparent relayed the use of restrictive interventions (both physical and chemical restraints) on her grandchild while waiting for care in an emergency department.
The OHSC has received complaints about misdiagnosis or incorrect treatment of consumers with ASD. Adults with ASD have complained about not being taken seriously when presenting to health service providers. A number of consumers with ASD have presented at hospitals and were not properly treated for serious conditions, such as compaction of the bowel, ruptured bowel and testicular torsion.
We have also received complaints describing safety issues for consumers with ASD who had behavioural problems in hospitals. In one instance, a consumer with ASD jumped over a balustrade in a hospital and suffered significant brain injury. In another instance, a psychiatric ward suggested discharging a child with ASD because it could not guarantee the child’s safety.
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CONCLUSION
Complaints received by the OHSC demonstrate some of the issues consumers face in services for the assessment, diagnosis and treatment of ASD. Similarly, we have received complaints indicating issues with consumers’ access to quality health services for other medical conditions, possibly related to shortfalls in communication, treatment and patient-centred strategies when dealing with consumers with ASD.
Thank you for the opportunity to provide feedback on this important review.
Yours sincerely
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Dorota Siarkiewicz Acting Health Services Commissioner
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