Support Connection I Support Coordination I Specialist Support Coordination
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My sister Louise was born with myotonic dystrophy, which is one of the most common types of muscular dystrophy. It is a genetic disorder, and our father had the same condition. Louise was fairly independent as a younger person, but as the myotonic dystrophy progressed, she needed more help. She developed gradually worsening problems with walking, balance, falls, breathlessness and fatigue. This made activities such as meal preparation, self-care, and accessing the community more difficult. Along with this comes some anxiety and loneliness, and the frustration of not being able to do all the things she wanted to. The NDIS was able to support Louise, and without it she would not have been able to continue living in her own home.
The NDIS is a wonderful scheme, but it is also challenging and difficult to navigate at times. Myotonic dystrophy is a progressive neurodegenerative disorder, so Louise sadly continued to deteriorate in terms of her health and functional ability. She always stayed positive and strong, but things were definitely getting more difficult. It was more difficult for Louise, and also more difficult for me as I tried to work, have a family, and care for Louise. It was such hard work trying to get plan reviews, funding, and then supports and resources in place. Even trying to get organisations and their representatives to communicate was a challenge. I desperately wanted to be Louise's sister and friend, instead of her carer and advocate constantly fighting for help. At one stage I thought that Louise may end up in a nursing home if we weren't able to get more help at home.
Then we found Little Blue Wren. They were highly recommended by a friend, and we arranged to meet with one of the coordinators of support, Tash. We were immediately impressed by her friendliness, professionalism, and enthusiasm. Louise and I quickly decided to join up with Little Blue Wren as our coordinator of support and service provider. It was such a relief and a breath of fresh air. Straight away there was action in terms of organising services to give Louise more independence and applying for an out of cycle plan review.
I could finally relax and enjoy spending time with my sister and leave the NDIS work to the CoS at Little Blue Wren. The communication was excellent. Tash was in frequent contact, always available, responsive to emails and phone calls, and visited Louise often. The funding and service provision was transparent and easy to follow. This hadn't been our experience with previous organisations. Sadly, my sister died earlier this year at the age of 48 but thank goodness we were able to connect with Little Blue Wren for the final stages of her illness.
It was such a relief to finally have a CoS and organisation who were happy and available to make Louise's life more comfortable and manageable.
I just wish we had found them sooner; I would certainly recommend Little Blue Wren to others.
Lisa Dark,
If you are like Lisa and seeking NDIS supports for your loved ones.
Contact us today on
02 67555 800
I want to highlight the many positive aspects of working with Paris and the team, as well as Jess. Their commitment and compassion truly shine through in all they do, and I have nothing but praise for their impeccable leadership.
Heather, your guidance and support have clearly shaped Paris and Jess into the impactful leaders they are today. It’s evident that their dedication stems from your influence.
I am truly grateful for the opportunity to work alongside the exceptional team at Little Blue Wren, particularly the Lismore branch led by the exemplary Paris. As a team leader, Paris demonstrates outstanding leadership qualities, fostering an environment where compassion and dedication thrive. The support workers under her guidance have approached our participant with unwavering love and empathy, transforming a once-restrictive care experience into one of empowerment and growth.
Previously, our participant faced significant barriers, including restrictive practices, limited community access, and a lack of familial connections.
However, thanks to the collaborative efforts of the entire Little Blue Wren team, our participant now enjoys holidays, has reconnected with the land, and has rebuilt relationships with family—all without the need for restrictive practices. This remarkable change speaks volumes about the team's commitment to implementing positive behaviour strategies proactively and effectively.
Our support coordinator, Jess, has been a beacon of compassion and understanding, making a profound impact on the lives of many participants. A notable example is a gentleman who had lost faith in the health system and was experiencing homelessness. Through Jess’s efforts, he found the trust to connect with us, ultimately leading to him receiving the necessary care from an occupational therapist and medical doctor. This transformation illustrates the power of building trust and community connections.
Additionally, the team’s holistic approach has been instrumental in ensuring that each participant's unique needs are met. By actively involving families and engaging with the local community, Little Blu Wren has cultivated a supportive network that fosters growth and resilience.
Their emphasis on cultural respect and inclusion is evident in every interaction, promoting a sense of belonging and empowerment among participants.
I also want to highlight Heather, another dedicated support coordinator who plays a crucial role in bridging the gap for families. Her unwavering commitment ensures that families receive the support they deserve, particularly for their daughter, who previously lacked essential resources. Heather’s advocacy and resourcefulness have made a significant difference in the lives of many families, ensuring they are not left behind.
Little Blu Wren embodies a deep respect for land and culture, consistently upholding the principles of participant-first care, NDIS values, and human rights.
The team’s proactive approach, along with their unwavering dedication to fostering relationships, has created an environment where participants can thrive.
Working collaboratively with such an extraordinary team is a divine pleasure, and I look forward to continuing our partnership in providing meaningful support to those we serve. The positive changes we have witnessed are a testament to the power of compassion, collaboration, and commitment to excellence.
Thank you for all the wonderful work you do.
Warm regards,
Brenda Zhoya
Positive Behaviour Support Practitioner,
Heart- Centered Behaviour Therapy (HCBT)
When support services were first introduced, a young man and his mother had limited engagement. However, after initial discussions, arrangements were made to provide both a support worker and a cleaner to assist the family.
Through careful research, a well-suited support worker was identified—someone who shared the young man’s passion for sport, particularly basketball and football. Their initial meeting uncovered a mutual connection through family friends, which helped establish trust and rapport.
With clear goals of maintaining an active lifestyle and gaining employment, the young man worked closely with his support worker to explore job opportunities. Together, they navigated the application process, including submitting an application to McDonald’s. The support worker accompanied him to the interview and assisted in preparing for his new role by organising his uniform and work readiness.
Beyond securing employment, the support worker continues to mentor him in workplace presentation, professional conduct, and strategies to navigate any challenges he may encounter in his new role.
This collaboration has already led to significant progress, and it is exciting to see the positive impact these achievements will have on both the young man and his family moving forward.
I met Heather in September 2020, after Dylan’s care provider reached out to her to help me, I was in a rut. I am a full-time working Mum of 4 beautiful children, with Dylan my eldest at the age of 19. I was exhausted both emotionally and physically exhausted and didn’t know what to do or how to keep going. In a short time of Heather hearing our story, she offered her assistance and suggested we start with Occupational Therapy Assessments and Behaviour Support Plans for Dylan.
Heather also laid options on the table for Dylan’s future and gave it to me with no BS, she was straight to the point. I left that meeting feeling a little confused and not sure what to think. Then I thought, Nope, I like her she isn’t just a person behind a desk, she will get stuff done, I had nothing to lose anyway, so I engaged her services.
At first, I would never have thought Dylan could ever live independently in his own home, and that all I needed was just a break, but soon Heather had empowered me with enough knowledge and support to realised that Dylan has the ability to access Support Independent Living with 24/7 care and that as a 19-year-old, this would be great, firstly to maintain our relationship and secondly, to let him live as a 19-year-old, with an Intellectual Disability. I accepted this as a reality and with no pressure, Heather got to work finding us a SIL provider, she arranged a meeting with the provider in our hometown, and I got to visit the SIL house where Dylan could potentially live. It was great, I loved the house, and I could really see hope for Dylan being able to live on his own, in a supportive and homely environment.
In late November of 2020, I had suffered a major carer burnout, Heather went to work organising weekend respite and gave me hope that I may be able to spend some quality time with my other children and rebuild our family relationship again. Then we hit a bump in the road, Dylan’s Christmas respite cancelled. At this point, I just could not do it. I was desperate. I contacted Heather and advised her that I was ready to relinquish care.
Heather did not let me make the decision uninformed and again with no BS, she prepared me for what I was about to do and made me sit on it for a few days. I couldn’t do it, I couldn’t let my son go, and with that, on the 22nd of December, Heather advised me that she would take Dylan for 8 days to give me the carers respite and continue working to get Dylan’s plan reviewed for more assistance in maintaining our family and getting Dylan into Supported Independent Living.
In the time that I have known Heather, she has been there for me with Dylan, she advocates for what we want for Dylan and she has gone above and beyond her duties as a CoS to ensure our family unit is maintained. Heather has helped me see things differently and now I have hope that when Dylan is ready for Supported Independent Living he will be quite capable, and as a Mother I will sleep at night not worrying.
Dylan has a rare disability called, Alpha-thalassemia X-linked intellectual disability (ATRX) syndrome and he has also diagnosed with Spina-bifida and is currently being assessed for Mental Health Disorder.
This means Dylan has Dylan has developmental delay and severely limited expressive and receptive language skills. Dylan always requires significant level of support. Dylan requires assistance and
prompting during all tasks and supervision for safety during mobility and activity participation. Dylan’s cognitive and communication limitations result in frequent behaviours of concern. This syndrome also results in diminished muscle tone (hypotonia) which may be the cause of his lower limb weakness, knee instability and reduced chewing ability. Due to his disability, Dylan also has fluctuating levels of support at night, with up to 3-month periods of minimal sleep and poor sleep habits, resulting in exhaustion and reduced ability to actively participate in tasks.
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