It is time to talk about the overuse of antipsychotics among adults with developmental disabilities

By Yona Lunsky and Tara Gomes

Inappropriate prescribing of antipsychotic medications – drugs like Risperdal, Zyprexa and Abilify — to seniors, especially those in long-term care with conditions like dementia, has been a hot topic of discussion across Canada in recent years. We have also increasingly heard about the high numbers of these medications being prescribed to children and youth with ADHD.

But there is another group of Canadians receiving antipsychotic drugs in high numbers that no one is talking about: people with developmental disabilities, such as Down syndrome or autism.

In our recent study published in the Canadian Journal of Psychiatry, we report that nearly 40 per cent of adults with developmental disabilities in Ontario were prescribed antipsychotics over a six-year period. Sixty per cent of the individuals prescribed these medications did not have the psychiatric diagnoses for which these drugs are generally studied and approved. 

This kind of prescribing has costs – for all of us.

Antipsychotic medications are expensive and their use in this population cost the Ontario government over $117 million during the six-year study period. Scale this amount across the country and the price tag becomes even more significant.  If any of that prescribing is potentially inappropriate, as our study suggests, that’s a lot of public health dollars that could be better spent elsewhere to support these individuals.   

But it doesn’t stop there. 

Without proper monitoring, antipsychotic medication use can lead to serious health issues. In this study, one in five adults on these drugs had hypertension and one in six had diabetes — rates higher than what is seen generally and for adults with developmental disabilities. These medications can also cause serious movement disorders and poorly managed side-effects can even contribute to mortality. 

So why do doctors so frequently prescribe antipsychotic medications to adults with developmental disabilities?

We can’t say for sure but we know the problem isn’t new – over-medicating those with developmental disabilities is an ugly hallmark of our past. There are many possible reasons why it continues today. 

Most Canadian health practitioners have limited to no training about developmental disabilities.  Add to that, a health system that has inadequate primary care and mental health services for the developmental disabilities population.  Then consider the stressful environments that can lead to difficult behaviours: exhausted caregivers who lack supports; education and labour systems that too often ignore the special needs of those with developmental disabilities.

Now, make antipsychotic medications free and relatively easy to access for most of this population.  And make non-pharmacological interventions unavailable or prohibitively expensive. 

Over time, the over-prescribing of antipsychotics becomes inevitable.

Antipsychotics, it seems, may be used to manage behaviour among adults with developmental disabilities instead of providing them the critical health and social services they need to thrive.

So what can we do about it?

We need to make sure that everyone currently receiving antipsychotics gets regular reviews of their medications with specialist input.  We also need to think about people not yet prescribed these medications. What problems lead to the first prescription — and what else can we put into place before that happens?

If this seems like a hopeless and overwhelming task, we can learn from the United Kingdom where they have invested significant effort and expense to reduce the prescribing of antipsychotics to those with developmental disabilities.

STOMP — Stop Over Medicating People — is  a three-year initiative that emerged following mounting evidence of overprescribing, including the Winterbourne View Scandal, where it was discovered that many individuals with developmental disabilities were wrongly overmedicated and abused in a private hospital. 

STOMP includes a shared pledge from health professionals across the UK to change how antipsychotics are prescribed and monitored.

It turns out prescribing guidelines are an important start, but they are not enough. We also need education about the diagnosis and treatment of mental health concerns specific to developmental disabilities and targeted at family doctors and psychiatrists.  But such outreach must also include pharmacists, nurses, psychologists, social service providers, family caregivers and the individuals themselves.

So, the question remains: Can we start to talk about and prioritize people with developmental disabilities in our discussion around inappropriate prescribing of medications?

And can we make a shared pledge to Stop Over Medicating People in this population across Canada?

Or do we need to wait for tragedies to be laid bare here as well?

Yona Lunsky is an expert advisor with, a Professor at the University of Toronto Department of Psychiatry, and the Director of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program at the Centre for Addiction and Mental Health.

Tara Gomes is an epidemiologist and Scientist at St. Michael’s Hospital and the Institute for Clinical Evaluative Sciences.  She is a Principal Investigator of the Ontario Drug Policy Research Network.