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We have changed our name! Kids on the Spectrum is now called Living on the Spectrum

Are you tired of repeating information to your health providers? Do you wish everyone was on the Sameview?

How often are you asked: “Tell me what’s been happening?” I often wish everyone were on the sameview when discussing supports.

As parents, how do we begin to answer that question? I’ve been to so many other appointments since I last saw you. Circumstances at home or school might have changed. How we present today may not accurately reflect how things are actually going. How do I quickly recall and explain this information, so it doesn’t use a large portion of our appointment?

Where it began

One of the most common issues faced by people with disability and their families is just how hard it is to have supports that communicate and work together. The way most people describe this issue is how painful it is to have to retell their story continually.

In my own family of five, two of our three children are people with disabilities. They are also both NDIS participants. My youngest son is diagnosed with a rare disease that presents similarly to Cerebral Palsy. While my middle son has a diagnosis of Autism and ADHD. Similar to many families like ours, in our lives, we have multiple medical professionals. Allied health professionals, support workers, educators, family, and so on. Every person has an important role in supporting our boys to achieve their aspirations.

A young boy smiling in a walker. Danny from Sameview uses the app to streamline therapies.
My youngest son is diagnosed with a rare disease that presents similarly to Cerebral Palsy.

Since 2016 I’ve been working to improve this specific issue through my service called sameview. We’re an online platform that makes it easy for families and professionals to be on the same page. Communicating with each other and working together towards their individual needs and goals. Right now, we have a community of over 4,500 individuals. Families, and professionals that are using sameview across Australia. I wanted to share some of the insights we’ve learned and hope you may have found this helpful.

What information is important to track and share and why: 

The most common pieces of information we see being shared include: 

  •  General profile information about our family, our history – this is what most families would say is the “story” that we must tell every new person that comes into our lives. 
  •  What happened in therapy appointments – things like new strategies and exercises that need to implement at home, school, and in the community. 
  •  Changes to our goals, priorities, and our support. 
  •  Feedback and outcomes – importantly, both good and bad, we need to be able to share what’s working and the context behind incidents and issues. 

Those are just the top of the list. What’s important to consider is why we need to share this information. Sharing information from our appointments is important. We need all the professionals from our teams to know what each other is doing. They should consider ways to work together so that we can achieve our goals most effectively.  

When it comes to people like our educators, activity providers, and support workers – they play an important role in helping us to implement strategies. Along with the things that we are working on in our lives – whether that’s home, school, or in the community.  

Capturing outcomes is where it comes together. We need to show our professionals a real-world view of our progress. One that isn’t limited to what we can show them in clinic. I also believe that being able to talk about outcomes and what that means in our everyday lives can help support us to be better at advocating for ourselves. 

Samview app features.
We need to show our professionals a real-world view of our progress

What are the workarounds to team communications that families have tried: 

It’s no surprise that families in this space, having to juggle so much already, are also great at finding workarounds and solutions. Families tell us that prior to using sameview, they had tried a combination of tools to solve the same issue, and these included: 

  •  Online shared storage solutions (Dropbox, Google drives, etc.). 
  •  Social media platforms (Dedicated Facebook pages, WhatsApp, or Messenger groups). 
  •  Group emails 
  •  Communication books 

Some of the issues faced when using communication tools:   

Some of the barriers our family and provider community face in implementing communication tools include: 

  • Privacy – especially in relation to using mainstream social media. Many providers are uncomfortable having to use, say their personal Facebook account or number for groups. Also worth considering is how access to groups, email lists, or shared drives is managed and kept up to date. 
  • Complexity of the tool – ease of use is an important issue and when you combine that with the workloads that many providers have, it can be a real barrier to the tool being used. 
  • Support and time – most of us feel at times that we just can’t take on anything new. One thing we’ve noticed that individuals and families need most is time and support. Not only is one-on-one or dedicated support for systems or tools incredibly important, but the time also that the support is available needs to accommodate our community as well.  

Side note about communication books – we’ve definitely had these ourselves in the past, and I know this is sometimes still the preferred way of sharing information in our community. But I’m yet to meet someone that hasn’t told me a story about losing, damaging, or even having the dog eat that book.  

Why is information sharing and collaboration important for our support and professionals? 

A common feeling shared with us by families and individuals in our community is that they need to ask for permission, a favour, or something extra to have their provider teams communicate and collaborate.  

You might be interested to hear that most of the thousands of providers we work with across Australia believe strongly in collaboration. The reason for this is that their main focus is on supporting a person to achieve their goals. And, the most effective way to do that is to work as a team. These providers are often hungry to know more about what our other supports are doing and the outcomes in our home, school, work, or community environments. 

It is also fair to say that not all providers think this way. Still, one amazing thing about the NDIS is that we see individuals and families becoming more confident in their choice and control, along Along with providers becoming more innovative and person-centered every year.  

If you’d like to know more 

We hope there’s been some information here that might help and give you ideas about making communication a bit easier in your own teams. If you would like to know more about sameview – a dedicated page for the Living on The Spectrum community is available with a webinar you can view, a place to ask questions, or even book a free one-on-one session with our team. You can visit the page here: https://www.sameview.com.au/lots 

Wishing this amazing community the best, we hope to see you online or in person! 

Exclusive offer – Try Sameview for free today.

Danny Hui 

Founder – sameview 


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