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What does the Parent Reference Group do?

Published 8th January, 2018
blog author Written by Parent Reference Group member, Elaine Bradley 

My name is Elaine Bradley and I have a 12 year-old son with autism. 

My journey of having a family member with a disability has been both challenging and rewarding.  Every day is different.  I am sure most of you have parents and/or family members to give you a helping hand during the good and difficult times.  Unfortunately, for those like myself who do not have parent’s or extended family members it can be hard to find support. 

However, I can assure you it is out there.

I would like to share with you how I am supported through my challenges and celebrations.  For me, my support is made up from three elements; my husband, our school and Therapy Focus. 

Hopefully we all have someone close to us who allows us to vent, gives us a hug when we need it, and is the truthful voice of reason when we have doubt.  They are also there for the “Yes” moments and “high five” our rewards and celebrations.  This may be your mum, dad, brother, sister, best friend, neighbour or therapist.  Mine is my husband.

I have been very fortunate that my school have been a major support.  They have met our educational needs with their outstanding knowledge and experience of working with families with children with special needs.  They helped us through the diagnosis process and reassured us all the way. This was a great comfort in what was a very lonely and highly stressful time.   The school community have also been a huge support.  I completely appreciate that not everyone has this experience.

Therapy Focus are my final link.  I receive a few services from them and our therapists have been my other voice of reason and the catchers when I fall.  They have been instrumental in my son being where he is today with respect to his independence, maturity and being the best version of himself that he can be.   Our therapists are part of the family and they embrace the challenges and celebrate the rewards with us.

The relationship I have with Therapy Focus has driven me to be more of an advocate for my son and I now have the strength and knowledge to support others. How do I do this?  I am a member of the Therapy Focus Parent Reference Group (PRG).  The group consists of family members of people who receive services, along with CEO Matt Burrows and Governance Manager Penelope Wakefield. 

I have made friends with a group of amazing and strong individuals who have their own unique journey, who listen, who are not judgemental and who are of like minds. They get what I am going through on a day-to-day basis and it is reciprocated.  We meet every other month and this gives me the opportunity to speak up and give my thoughts about services and initiatives that the organisation is currently investing in and proposing for the future. 

You may remember seeing some of the members handing out balloons at Sunflower Sunday. We are also involved in the Connecting over Coffee support group at the Goollelal office. You may recall seeing requests for nominations for the Peoples Choice Award, which was initiated by the group. 

I have been a member of this group for the past year and I can honestly say that my voice is heard. I am empowered to be an advocate for my son and I do not feel alone.  My son has all the support he needs. I too have the support I need from this great group and I am helping make a difference not just on a personal level but also for others. 

Do you want to be a voice for your family member?  Do you want to have an input into the services that you need and for the organisation to understand how you deal with everyday life and share the information?  If the answer is YES, we need you to join us. 

Come along to one of our meetings and see for yourself. No matter your background, language, gender, ethnicity or even if you are doing it tough, you can stand up and not only help your family member but be supported yourself. 

I know that, some of you are saying “I don’t have time”.  That’s okay.  If you have any feedback or comments, the PRG wants to hear from you.  You can email us at  PRG@therapyfocus.org.au.

Together we can all make a difference.

Read more about the PRG.   

 

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