Disabled adults get inadequate health care, study finds
By Andrea GordonEducation Reporter
Tues., Nov. 12, 2013timer3 min. read
Adults with autism, Down syndrome and other developmental disabilities face more physical and mental health problems but are less likely to get the care they need than other adults, a new Ontario study has found.
The research, released Tuesday, is the largest examination of its kind and paints a worrisome picture of how this "silent minority" — often unable to communicate their distress — is served by the health care system.
"It's hard for them to make their needs known," said Yona Lonsky, lead author of the Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario.
And, what's more, the care these adults receive often does not meet health-care guidelines for this cohort, she added.
While a higher proportion of these adults live in poorer neighbourhoods and are diagnosed with chronic diseases, they face larger gaps in services.
They more often end up in emergency departments in crisis. But they are less likely to visit their family physicians for regular checkups or standard preventive care such as cancer screening.
Almost half are prescribed multiple drugs, most commonly for mental health and behavioural problems, the study found. Twenty-two per cent take five medications simultaneously, and some in potentially dangerous combinations.
And while a team approach is recommended to co-ordinate care between physicians, nurses, occupational therapists, psychologists, social workers and other care providers, only one in five adults with a developmental disability is being treated by this type of health team.
The study was conducted by the Institute for Clinical Evaluative Sciences (ICES) and the Centre for Addiction and Mental Health (CAMH). A summary was released Tuesday and the full report will be available in December.
The findings didn't come as a surprise to Roger Oxenham of Toronto, whose daughter Rachel, 26, has a developmental disability and bipolar disorder.
Rachel went through a crisis as she entered her 20s, a period when many young adults like her are most at risk of falling through the cracks as they "age out" of pediatric care and children's services.
In one year, she ended up in emergency rooms around the city 18 times, arriving in distress and fearing she would harm herself. It wasn't uncommon for Rachel to wait 12 to 14 hours, alone and upset, before being admitted to the psychiatric ward, where she would be medicated and released, only to start the cycle again.
While her own physician and emergency staff provided good care, says Oxenham, there was no communication between caregivers. The strategy seemed to be "patch her up and send her out until the next time."
He says the system needs to connect hospitals, parents, family doctors and other therapists who work with patients and understand their complex needs.
That approach is critical, adds Lonsky, a scientist clinician with CAMH and director of the Health Care Access Research and Developmental Disabilities (H-CARDD) program. She says initiatives are also needed to empower patients, parents and caregivers advocate for themselves.
The Atlas study is the first to track health needs and treatment for this often overlooked group — estimated at 66,000 adults under 65 in Ontario. Too often they become invisible after moving from the care of pediatricians and parents into adulthood, particularly the majority who live with mild disabilities. As a result their health problems and needs are overlooked.
Researchers had to mine data from social services to get an accurate picture of the numbers of adults with developmental disabilities and their health care needs.