Mental health care for people with intellectual disability

19 September 2018

“We need people with intellectual disability to be part of every discussion about mental health care. It would be a very different world if we put the lived experience and health of people with intellectual disability at the centre of our discussions.”

World Mental Health Day on 10 October is an annual reminder of the need to make sure everyone has access to good quality mental health support. Michael Sullivan, CID’s Vice Chair, recently spoke about mental health and intellectual disability at the 2018 UNSW Roundtable. Read a transcript of his speech or watch a video of his address.

Every person has a name. Every person with an intellectual disability is an individual with a name and a life. We are not just a collection of behaviours or a syndrome full of symptoms.

But people with intellectual disabilities are very often treated as if we are nobodies. As if we are invisible.

We deserve a good standard of care

The standard of mental health care for most people with intellectual disability at the moment borders on neglect.

When the draft national mental health plan came out in 2016, it did not even mention people with intellectual disability. The plan had a list of people who often miss out in mental health planning. We weren’t even on that list.

And if you think about the fact that around 400,000 people in Australia have an intellectual disability, that’s a lot of people who seem to be invisible to health planners.

Even now, after a lot of work, noise and advocacy we have been completely left out of the implementation plan for the mental health plan. Not even a mention.

Most people are encouraged to look after their mental health, to talk to their GP if they are feeling low, to try meditation, mindfulness or massages. To look after their health and wellbeing.

Are you ok? People in the general population ask each other. Does anyone ever ask a person with an intellectual disability this question?

And while some of these strategies won’t stop a serious mental illness from occurring, it does highlight the fact that people with intellectual disability are completely left out of the conversation about mental illness. We aren’t educated about mental health or our own feelings.

We are not encouraged to get help early, and it’s a fact that early intervention is one of the best tools there is to avoid serious mental illness.

Problems experienced by people with intellectual disability

In people with intellectual disability, early signs are overlooked as behaviours relating to the person’s intellectual disability. And because that window of opportunity to intervene early is closed, the person develops a serious mental health problem, and they end up being dragged off to hospital by the police.

What could have been an opportunity to help someone turns into a harrowing event instead, and that is just unacceptable.

Even when we do get to see a doctor it can be really hard for people with intellectual disability to explain to the doctor what’s going on, if they are mentally unwell. We need the doctor to take lots of time to listen properly, to get to know us, and not to just write us off as too difficult.

A lot of people with intellectual disability can’t talk or explain in words how they feel. They communicate how they feel by their behaviour. There are not nearly enough doctors and nurses who understand how to work out a mental health problem for a person with intellectual disability.

For people with intellectual disability living in group homes there can be high staff turnover, so there might be no staff there who would notice that a person’s behaviour is changing.

Although we know that people with intellectual disability are two to three times more likely than the greater population to have mental health problems, we still don’t seem to have systems in place for known trigger times of extra stress such as when people move to a new home or when they leave school.

The families and carers of people with intellectual disability can also be severely impacted when the person they care for also develops mental health issues, even to the degree of suffering mental health problems themselves.

Progress is happening, but not enough

Since the 2013 roundtable, when the eight elements of an effective system for people with intellectual disability were developed, along with a list of priority actions for each element, there has been some progress here in New South Wales.

Our state mental health plan has a section devoted to people with intellectual disability.

We have Professor Trollor’s centre right here at the University of NSW.

Professor Julian Trollor addressing the 2018 Roundtable

And the Government has funded three pilot intellectual disability health teams. We have asked Brad Hazzard to fund teams right around the state and we are glad he is listening.

But this is only the beginning.

We need … to revisit the eight elements and give recommendations for where we need to go next to support the continued and steady improvement in mental health for people with intellectual disability.

We need access to good ongoing health care, with trained professionals. People who understand the needs of people with intellectual disability.

We need people to work together, so people with intellectual disability aren’t sent from one service to another, before they can get help.

And we need to pay extra attention to those people who are in danger of falling through the cracks, such as people in the criminal justice systems, and those from [culturally and linguistically diverse] or indigenous backgrounds. Why? Because we are all people and we deserve to have a good standard of care.

And lastly we need people with intellectual disability to be part of every discussion about mental health care. It would be a very different world if we put the lived experience and health of people with intellectual disability at the centre of our discussions.

Please take today seriously as a chance to make a difference in the lives of people with intellectual disability.

And please remember. When you are working with people with intellectual disability, in whatever field, please call us by our name. We aren’t nobodies. We are someone important, just like you.

(This speech was presented to the 2018 National Roundtable on the Mental Health of People with Intellectual Disability.)