Why speak Up?

When you think of healthcare and disability support, we bet you don't think of Uber!  With the proliferation of rating apps driving the success in the shared economy, coupled with the desire for greater transparency, it makes sense that something similar should be applied to the disability sector. 

Consumer reviews apply to any sector in fact, Global Chairman of Price Waterhouse Coopers (PWC), Bob Moritz says ‘’it takes a lifetime to create a brand like PWC and preserving that depends on how organisations respond to events…because there is less and less trust in authoritative figures, it’s probably better to allow for your people, your customers, and the society to comment on this stuff and make sure you’re doing all you possibly can and if you are transparent then they become your best advertising agencies.’’ 

And that's why MYCARESPACE was created – an exciting new national platform that connects disability providers with people in their local community – and it's based on peer recommendations for providers, services and experiences. Many forums exist on social media for people to solicit views and ideas from their peers. The quality and accuracy of the information shared on these forums can be very subjective and in some cases its factually incorrect. Many of these forums are closed or private for valid reasons, but the providers remain unaware of this valuable feedback from customers and miss the opportunity to respond or make changes to their services.
 
Word of mouth recommendations are the most authentic form of marketing - especially from our peers with similar requirements to ours. Disability advocates have been lobbying for greater transparency and the research has shown time and time again that greater accessibility of information is what is required, especially in human services. Customer reviews and discussions about disability support, care options, equipment, recreation, travel options, community activities and even the arts and entertainment can be very helpful in making informed health and lifestyle decisions, such as choosing which services to access. It can also create meaningful connections. 

Randa Habelrih is a mother of Richard, a young man with autism. She loves MYCARESPACE because it helps her to find registered NDIS providers and community activities. "Richard had been wanting to explore his creative side for some time but we had been unable to find the right mentor.  MYCARESPACE connected us with the right person for our son."

Ms. Habelrih goes on to say “MYCARESPACE fills a much-needed gap in the market, bringing all service providers together in one site, and providing some order and clarity to a process which at times can seem to be overwhelming."

Malia Lardelli has a young daughter Maia with Down Syndrome and she recently moved interstate, ‘’We recently moved from Sydney to Geelong and we needed to find new providers. I was able to use MYCARESPACE to find providers within a specific distance from our home.  My favourite part of the website is having the opportunity to provide feedback on providers.  When you are new to an area you really rely on word of mouth recommendations in deciding who to choose.  I have also shared some of the resource links on autism with my son.  It has helped him to be more understanding towards one of his friends.”

As more service providers crop up as a result of the NDIS, and abuse in disability organisations has come to light (such as the recent Four Corners investigation), it's important that people feel empowered and safe enough to speak up. 

MYCARESPACE allows people to do that - in an online forum with likeminded people. Alanna Julian, Living Life My Way Disability Ambassador, has experienced both good and bad service in the past and strongly believes it's crucial that people drive change by speaking up.

"If people don’t speak up then no change can happen", Ms. Julian says. 

"It’s important to speak up so your voice can help others in making their decisions. When you speak up it builds your confidence and self-esteem to know you are asserting yourself. If you don’t, it could take its toll on your health and sense of wellbeing”. 

There is a tendency not to speak up because people think they might be penalised - that it might result in further bad service. In a group setting, people might worry about putting others off side by speaking up. People might also be afraid to share recommendations for doctors and treatments as it's such a personal decision, and symptoms and treatments vary so much. 

It's important to build trust in the community to feel comfortable about speaking up - and Linda McCarthy, an early adopter of MYCARESPACE, has done just that. She loves the way technology has improved the disability sector.

"I wish MYCARESPACE had been around when my son was younger", Ms. McCarthy says. "In those early days it would have helped us choose the appropriate therapist and made finding good support a lot quicker and easier. I can now use MYCARESPACE to quickly work out who are the better providers that other parents have worked with and trust. Word of mouth is the most reliable way of finding caring support."

If you would like to speak up about something but you are not sure how to go about doing this, here are some resources that might help you:

• If you are aware of abuse, please report it to emergency services on 000 immediately, or lodge a complaint with the Ombudsman. 
• Under the National Disability Insurance Scheme (NDIS) people with disabilities are now responsible for buying products and entering contracts with service providers. A nationally consistent quality and safeguards framework is being developed to ensure that people interacting with NDIS can expect consistent standards and safeguards wherever they live in Australia. For more information on this click here
• The NSW Office of Fair Trading offers self-learning tools, information and advice to help everyone make the transition to the NDIS. click here for more details: .
• If you would like to be heard and share your opinion in a safe environment, register now at MYCARESPACE We would love to hear from you - your actions may lead to better outcomes for others.

This article was written by the writer, activist and speaker, Carly Findlay. You can follow her here: