Western Australia’s disability community is calling for stricter social media policies to protect underage participants on the National Disability Insurance Scheme.

Racking up millions of views, ‘NDIS TikTok’ has surged in popularity, with providers taking to the platform to advertise their businesses through trendy short-form videos.

The viral ‘day in the life of a support worker’ videos often contain personal details and the faces of underage clients, raising ethical concerns.

The issue hits close to home for former support worker Katherine McDowell, whose son Harley lives with Huntington’s disease and receives funding from the NDIS.

She says social media is a growing problem for those on the scheme.

“Some people justify filming participants by saying it helps grow their business or raise awareness, and I do think advocacy is important,” she says.

“But when it comes to support workers filming their clients, it’s a different conversation.

“The reality is, they’re getting something out of it; more followers, engagement, new clients, while the person they’re filming often gets nothing. That’s where the ethical line gets blurry.”

While the NDIS code of conduct does not mention social media explicitly, it does set clear legal expectations about privacy, dignity, and confidentiality—expectations Ms McDowell says are being ignored.

“There should be no grey area – they’re breaching guidelines. How dare you plaster your client all over the internet for forever and a day,” she says.

“We have a social media ban for under 16’s, but businesses can still post them?

“If there’s protections for cognitively aware under 16s, why are we not doing the same for our socially vulnerable?”

NDIS providers require clients to sign a media consent form to allow their faces to be posted online.

Ms McDowell warns it’s not enough protection for those whose identity will remain online forever.

“They’re made to sign those consents, yet how much do [the participants] understand, and why are we making them sign instead of having a collaborative discussion?” she says.

Youth Disability Advocacy Network chief executive officer Isabella Choate says informed consent is vital, and participants must understand exactly what they’re agreeing to.

“A principle of child safety is that it’s given in a youth friendly way, and that there are adults who can sit down and talk through the questions,” Choate says.

“You need to understand that if you’re a young person and you’ve been given this document to sign, you might feel pressured and like you might not actually be given a real choice.”

Choate says members of YDAN have approached them with concerns regarding online posts.

“They feel uncomfortable seeing people with disability used in a way to make a service provider look more flattering,” Choate says.

“What we are seeing is that service providers are sort of taking a lot of the limelight – they need to remember that people with disability are paying customers.

“NDIS TikTok itself is not inherently bad, but the way service providers are taking advantage of that space, monopolising that space, in order to bring people into their own service, is really quite disheartening.”

NDIS provider and ADHD expert Connor Greene believes a middle ground is possible.

“I don’t believe the answer is to never post anything. I think that’s too simplistic. There are support workers and providers doing genuinely beautiful work. There are participants who may feel proud to be included, that are proud of what they are doing or have accomplished,” he says.

“There are families who might want to see what real community access, mentoring, therapy, support or inclusion can look like. You can do these things without turning the participant into marketing material.

“Show the activity without showing the person; take photos at the backs of heads, hands doing an activity, leave out school uniforms.”

He says NDIS TikTok can be helpful, but the culture around it needs to change.

“The question should always be, would this person still feel respected if they saw this post in five years?”

Katherine McDowell would like to see the NDIS’s privacy policy amended to include social media.

“I believe the government can do better and protect our most vulnerable from businesses who post videos with their clients,” she says.