Disability support workers and participants need to understand the boundaries when it comes to fulfilling their role, according to controversial advocate, clinician, trainer and author Dave Hingsburger.

While Canadian Mr. Hingsburger passed away last July, in an unearthed Open Future Learning YouTube video, posted six months before his death, he explains that support workers are neither friends or family – a quandary that many in the disability sector often find themselves in or wonder about as MARINA REYNOLDS discovered.

It’s a divisive subject – should disability support workers be friends with the people they are trusted to support?

Mr. Hingsburger admits he received some flak about his views on disability support worker boundaries but nonetheless, stuck to his belief that the support workers are employees, not friends.

Participants and carers ask how it’s possible to be friends when someone is paid to spend time with you, while support workers claim some form of friendship, with boundaries, is vital when forming a trust relationship with clients.

Providers, too, often claim all their staff and clients are “family”.

Several years ago, the ABC investigated the subject. One of the support workers interviewed in the article stated it was a “complicated issue”.

“I think that naturally, when you’re spending so much time in the week with someone — and kind of being really intimately involved in their life — I think it’s difficult not to form a relationship,” the support worker said.

But, Mr. Hingsburger sees the matter as clear black and white.

He says the word “friend” is bandied about too easily, too quickly, too freely, promising much but “violating all sorts of boundaries in terms of what they share with people”.

But, Mr. Hingsburger asks, what happens when they leave?

“You just see this devastation,” he says.

“You’ve come into people’s lives, you’ve misrepresented who you are; you’ve misrepresented the feelings that you have – you misrepresent all of that.”

“And you purposely engage and solicit real, affectionate feelings from someone.”

“And then you cut, and leave and take another job.”

Mr. Hingsburger said people with disabilities are “simply devastated” by that.

He said it was often very hard for the staff that follow because the people left behind are grieving the loss of their “friend”.

Many disability service providers experience great staff turnover – which can be the nature of the field – which can be hard for participants.

“You’ve got people coming in – they lie, they leave. They lie, they leave, they lie, they leave …,” he said.

“We’ve got people with disabilities suffering a lifetime of mourning, a lifetime of grieving because they believed that this was a friendship and that this was reciprocal.”

“And they believe this because you said that – you said that in what you called yourself and how you represented yourself.”

Mr. Hingsburger said we use the lie of friendship to cover up the social isolation of someone living with a disability, and the moment we stop doing that, that social isolation can be seen very starkly.

Very quickly people realise that if they aren’t friends anymore, then they don’t have any friends any more and don’t know what to do or where to turn.

“What are we supposed to do!? We;;, that’s where we start, isn’t it,” he said.

The ABC article also quoted a participant who said he relied on his support workers to assist with decision making and communication, but he is still in charge.

Read about the conflicts and boundaries in place in the ABC article here.

The National Disability Insurance Scheme (NDIS) is quite aware of the need for friends and family in forming invaluable informal support to participants, and will even help fund social activities to help participants form real friendships.

The NDIS Commission expects support workers to “act with integrity, honesty, and transparency. promptly take steps to raise and act on concerns about matters that might have an impact on the quality and safety of supports provided to people with disability. take all reasonable steps to prevent and respond to all forms of violence, exploitation, neglect, and abuse”.

In its Code of Conduct, the NDIS has guidelines for workers and providers.

Queensland Health has also released a special booklet which outlines guidelines and boundaries for support workers.

These include the qualities of a good support worker, calling for them to be “professional, yet friendly” and “human, without being dependent or needy”.

It also states: “The role of a support worker is to build, support and strengthen the existing social, family and community network of a person with a disability. The role of a friend is different from the role of worker and constitutes a conflict of interest in doing your job.”

It’s worth a read if you get the chance.

It can be argued that it all comes down to circumstances, the dynamics of the situation and individual participants as well as the language we chose to convey the status of our worker-client relationship.

While it might be acceptable to promote that a provider “treats all participants LIKE family”, it is another thing to claim they ARE family.

And ditto for disability support workers and providers – you can treat the people in your care LIKE a friend (be kind, considerate, help them out and even be their confidant, to a degree – remembering in some circumstances the working relationship may involve very personal tasks and you may be privy to some confidential material) but to classify them as YOUR FRIEND is something else again.

As Mr. Hingsburger says, the last thing a support worker wants to do is lull participants into a sense of false security, then whip the carpet of friendship out from under them when they do, as is the nature of disability work.

For decades, as a clinician, trainer and author, Mr. Hingsburger was an unrelenting and tireless advocate for the rights and freedom for people with intellectual and developmental disabilities.

A prolific writer, he was an early “blogger” and “vlogger” where he mused daily about diversity, disability and difference with equal doses of eloquence, humour and provocation – sometimes drawing ire, sometimes applause.

Watch the full video here and make up your own mind.